This young man’s dedicated grandmother, Patricia, reached out to ASK after becoming his legal guardian. Patricia’s goal for contacting ASK was to ensure she was getting all available resources and support to provide for her grandson’s success, safety, and happiness.
From the board of directors and staff at The Arc of Indiana, we hope you all enjoyed a peaceful and relaxing Independence Day weekend.
The combined strength of local Arcs, state Arcs and The Arc of the United States makes The Arc the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families.
Thanks to our founders, and present day families, self-advocates, members and chapters, The Arc of Indiana continues to advocate for the rights of people with intellectual and developmental disabilities.
The ARC of Indiana Newsletter June 14, 2020:Today Show highlights COVID-19 impact on disability community
Last week, NBC’s Today Show featured families from two chapters of The Arc, talking about how the COVID-19 pandemic has impacted their lives. Anchor Craig Melvin also sat down with a chapter leader to discuss the challenges providers face and why people with disabilities, their families, and the direct support workforce need to be included in recovery plans.
Summertime Family Fun in the Time of COVID
Many summer camps are cancelled. Museums are closed. Even playgrounds, pools, and zoos may not be open at full capacity. Families are already tired, and now we need to re-think summer plans. This includes us at Family Voices Indiana.
Regan’s daughter was excited for her first summer of overnight camp at Camp Riley. Laurren’s family was looking forward to a week away at a family-centered autism summer camp. Like most of you, our plans were changed through the necessary COVID cancellations.
This year will not be a typical summer for any of us, and keeping our families safe and healthy has taken on a new importance. Here at Family Voices Indiana, we’ve spent time trying to re-think our own summer plans, and now we’re sharing some of our ideas on how to get your family enjoying the great outdoors this summer! First, we’ll share some tips on exploring Indiana’s “backyard”- our state and national parks. Then, we’ll also share some ideas on activities you can try closer to home, in your own backyard!
Court Cases May Be Providing Tail Winds – Wit v. UBH
Marjorie K. & Preston K. v. Anthem Blue Cross, Maximus Federal Services
Case outcomes may be helping MHAIP win external reviews
In Wit v. United Behavioral Health, the court found that UBH’s internal guidelines were flawed and misleading, resulting in reduced levels of care. It was a seminal case in terms of supporting enforcement of the Mental Health Parity Act, and required that health plans base mental health medical necessity rulings on evidence based, balanced guidelines.
In Marjorie K. & Preston K. v. Anthem Blue Cross and Maximus, and Joseph K vs Blue Shield of CA and Maximus, the DL Law Group took aim at the role of independent medical review agencies. Maximus Federal Services is an external review agency contracted by the State of CA and many self-funded insurance companies to provide independent medical reviews. In Preston K., the court found that Maximus could be named as a co-defendant and held legally responsible for the “independent” medical reviews that they issued. This ruling served to put all so-called independent review agencies on notice. This outcome will help to push coverage for care that provides lasting change.
Star of the Month – Amanda Harrinauth, poet
Amanda Harrinauth is a poet and global ambassador for the Northern California Special Olympics. She was diagnosed with autism in 2016.
Amanda started to write poetry in college as a way to heal herself “from pain and this world of discrimination, bullying and intolerance”. With perseverance, she has become a student at the Academy for Coaching Excellence in Sacramento, California and runs the website poetmandy.com. She aims to become a life coach.
After getting in touch with Autism Eye, Amanda wrote the poem below, which she says “expresses my feelings of being on the autism spectrum and being locked away”.
When do you say that being locked away in your mind is all that you need.
I already fixate regularly on what could happen to me.
My home has become a prison.
There are times where I can’t see beyond the four walls.
The outside world, that which I’m used to being a part of with all the sights and sounds, now has gone silent.
My brain can no longer contain the creativity that calls me.
Covid-19, you make me want to scream. My world has been turned upside down; my routine has been ransacked.
When I have panic attacks, they make me feel breathless.
I have autism sometimes, I’m emotionally locked away, I never thought that something like Covid-19 would have me physically locked away.
As chapters of The Arc begin to safely reopen services, we will be delivering face masks and signs throughout the state to thank hard working DSPs and chapter leaders for their service to people with I/DD and their families during this difficult time.
With over 30,000 members and 43 chapters in Indiana, and 140,000 members in over 700 chapters nationwide, the combined strength of local Arcs, state Arcs and The Arc of the United States makes The Arc the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families.
Special thanks to the following organizations who helped us purchase 9,500 masks: AWS Foundation, Duke Energy Foundation, Hoover Family Foundation, ICEArc, MHS and Mutual of America. #TheArcImpact #WeareTheArc #ThankYouArcHeroes
The Autism Research Institute recently began networking parent support groups worldwide. The goal is to improve communication among support groups and to inform the international autism community of the current state of the science regarding the underlying biology of ASD, as well as evidence-based treatments. If you are a representative of a parent network group, please email our outreach coordinator. Please include your website address and/or brief summary of your mission.
What a Difference a Day Makes Campaign
Regions Bank has chosen Autism Society of Indiana as a participant in their What a Difference a Day Makes campaign.
Throughout June, Regions Bank is highlighting nonprofit organizations that provide valuable services to people with autism, as well as their families. Check out our page and vote for ASI once DAILY through June 30. Your votes will lead to financial grants of up to $5,000 from Regions in support of these nonprofits. Each participating nonprofit will also receive a day of volunteer service from Regions associates.
This monthlong contest complements Regions’ ongoing observance of the 30th anniversary of the signing of the Americans with Disabilities Act. The purpose of the landmark legislation is to promote fair and equal treatment while providing a more inclusive society.
- Updated Guidance for BDDS Providers on Temporary Polices Changes Related to COVID-19 and Appendix K
Updates to previously issued guidance are noted in red.
- Updated FAQ on COVID-19 Policy Changes
- Decision Making Tool Families as Paid Caregiver
- Back On Track Indiana – Guidelines for Adult Day Services
- Additional Guidance for Day Service providers
- Additional Information for case managers
- Resource – Integrated Support Conversation Starter
Options to Get Moving by Cyndi Marty Stone
I knew early on that my son was going to need a wheelchair to help him get around in life. At first the doctors told me that my son would probably not walk at all. After years of therapy from First Steps and the use of a stander, my son took his first steps in front of my husband and me. Even though my son could walk, he was not steady on his feet and did not have a lot of stamina. My son’s first wheelchair was donated from a little boy that passed. He loved going to doctor’s appointments in his wheelchair. He felt so proud and grown-up in his chair.
Though these are challenging times for our community and so many others, we plan to continue to share the stories of people with autism and their families through Spectrum Spotlights and other content. We hope these will offer a look into the many diverse perspectives in our community, and provide inspiring and uplifting stories when we need it most.
Meet Rhett Y.
Even before he was diagnosed with autism spectrum disorder at age six, Rhett knew he was different. While other kids his age lost themselves in playgroups, Rhett was more content playing with his favorite toys at his own pace and in his own space. As time went on, he grew more comfortable in larger groups and excelled academically, but he still struggled with small talk and breaking routines in his daily schedule.
The Autism Research Institute has been active during this unprecedented health and financial crisis. In late February, we adjusted our efforts and began facilitating numerous online webinars and social stories to help support daily living activities and address stress and anxiety. In addition, we continue to communicate and network with scientists regarding their research. We also began accepting initial applications for this year’s research funding on the underlying causes and potential treatments for autism.
Autism families in lockdown
Our star of the month deservedly goes to all the families touched by autism and trying to cope in lockdown in a system that appears at times to be working against them.
Many report great difficulties in accessing the food their children require, particularly if they have a restricted diet. They feel the big supermarkets have let them down. Unable to venture to out to the shops with children who won’t socially distance, they have tried to access home deliveries like other vulnerable groups – but have been unable to do so.
The Arc News in Indiana will soon be in the mail, but you can read it now at: The Arc News in Indiana Spring 2020. The article and photos on pages 4 & 5 highlight all of the wonderful work taking place at our chapters during this difficult time – so please be sure to check that out.
Our Response to COVID-19
The Autism Society of Indiana promises to remain committed to improving the lives of all affected by autism across the spectrum and throughout the lifespan, and will focus on providing information, resources, and advocacy efforts to address these urgent needs.
The autism community faces extraordinary challenges during the COVID-19 crisis. We are proud to launch a comprehensive toolkit on our website, which provides COVID-19 information and resources by topic, including Mental Health, Modifying Routines, Lifestyle Supports, and much more.
Welcome Becky Tapp to the ASK Board of Directors!
Becky Tapp joined MDwise as Vice President of Health Services in August 2019. She is responsible for leading the Health Services Teams. Ms.Tapp brings 30 years of experience in the medical field with more than 20 years in leadership roles. Her experiences include acute and long-term care, staff development, strategic planning, consulting and medical management for both providers and health plans. Most recently, she served as the FEP Director of Medical Management for Anthem where she supported the Federal Employee Program. Ms.Tapp holds a Bachelor of Science in Nursing from Spalding University.
Share your story with Congress
Share Your Story with Congress – Take Action on 4th Stimulus Package! Congress is headed back to work and congressional leadership is negotiating what will be in the fourth stimulus package. We need to make Indiana’s congressional delegation does not forget Hoosiers with disabilities!
COVID-19 Crisis Results in Development of Creative LCC Engagement Strategies
Although the COVID-19 crisis resulted in many unexpected changes to our daily routines and approach to work right now, our intent to effectively serve and support individuals with autism spectrum disorder (ASD) at the community-level through the collaborative efforts of the local community cadres (LCC) has not. HANDS in Autism® is busy developing materials, resources and supports to assist families, providers and individuals through this challenging time (check the COVID-19 resources on our website).
Coronavirus Impact: Talking to Kids About Changing Schedules, Altered Plans, and Disruption
Amanda Tami, LPC, BCBA, The Johnson Center for Child Health and Development
Thursday, April 30th. 1 p.m. Eastern (U.S.).
Catatonia and Autism Spectrum Disorders
Robert L. Hendren, D.O. , University of California, San Francisco
Wednesday, May 13th 1 p.m. Eastern (U.S.)
Act now on 4th stimulus package
The fourth stimulus package coming from Congress is in the works; however, we need help ensuring services and supports for people with disabilities doesn’t get left out. Three major areas still need to be addressed:
- Grants to Home and Community Based Services (HCBS) to boost the pay of Direct Support Professionals (DSPs). Indiana stands out as a leader in shutting down institutions. We need to remain a state without institutions, and grant monies will help prevent this.
- Paid leave and sick days for family caregivers of adults with disabilities. We need to approve and broaden this definition so that other family members, not just parents, are extended this resource to take care of loved ones.
- Personal Protective Equipment (PPE) for DSPs. DSPs are on the frontlines and are the unsung heroes of this pandemic. They need to protect themselves and those they are providing essential services to on a daily basis.
Please call and/or email your members of Congress and ask for their support of these important issues!
New stimulus check update
Just like Indiana weather, if you wait a day, things will change – but this finally is a permanent fix! Last week, the Department of Treasury announced that Supplemental Security Income (SSI) recipients will automatically receive their economic impact/stimulus payments directly to their bank accounts through direct deposit, Direct Express debit card, or by paper check, just as they would normally receive their SSI benefits. Treasury anticipates SSI recipients will receive these automatic payments no later than early May.
Encouraging Disability Awareness & Acceptance in Children by Katie Friedricks
During the month of April many organizations and families will celebrate Autism Acceptance or Autism Awareness Month. One way to build both awareness and acceptance from a young age is through children’s literature. Our children begin to understand the world and people around them in part through the books they read. Unfortunately, it can be difficult at times to find adequate and/or accurate representation of characters with disabilities in children’s literature. The following resources can help if you are on the lookout for books for your child, their siblings or other family members, or peers.
Claire Cookson, employment champion
After we get through the Coronavirus crisis, we need people who can help to create a better post-lockdown world for people with autism. One of those who will be striving to achieve that is Claire Cookson, who has taken over the reins at a charity that aims to get 20,000 young adults with learning difficulties and autism into full-time paid jobs over the next decade.
Hands up if the children you’re working with have fewer problems since the pandemic started. No? It’s not surprising is it? Stressed parents, stressed children. Not a good mix. Throw self-isolation and no school in and problems escalate.
Are you interested in gaining more confidence and skill in working with children’s behavioural problems at this difficult time?
If so, sign up now for our Behaviour Difficulties in Children course on 30 April -1 May with Dr Angela Latham. Angela is a Consultant Clinical Psychologist with extensive experience working in CAMHS and has developed numerous training packages and held the position of CYP-IAPT Parent Lead in the North West. You can join her on Behaviour Difficulties in Children via Live Interactive Recording
Our thoughts are with our community and the families and professionals supporting children with special needs who face added challenges during this troubling time. There have been extraordinary changes in the world since our last E-Newsletter was delivered, but ASK’s mission remains the same and is as critical as ever.
ASK is continuing our commitment to offering critical services to families during the COVID-19 crisis, and we are doing so remotely, with staff working from home offices. We have implemented additional COVID-19 related programming to keep families updated and informed about resources that will offer benefits both during and after this crisis.
Our parent liaisons are available for support. You can request parent liaison contact HERE.
For a list of updated COVID-19 related resources visit our website or click here HERE.
Anxiety, Autism, and the Five Prime Suspects – including COVID19 Q&A
Christopher Lynch, Ph.D. Goryeb Children’s Hospital — Wednesday, March 25th 1 p.m. Eastern (U.S.)
Rhiannon Rees-Jones, Apprentice of the Year
Rhiannon Rees-Jones, 39, is celebrating after beating 41 other apprentices to win Apprentice of the Year 2020 at Northamptonshire Health and Care Partnership (NHCP).
Rhiannon, who has Asperger’s syndrome, works as an administrative assistant in Northamptonshire Adult Social Services. She is also carrying out an apprenticeship in Level 3 Business Administration, which is giving her a perfect platform to progress her career.
COVID-19 Creates a Creative Engagement
HANDS in Autism® is complying with state and local precautions and guidelines in regards to maintaining social distancing during the midst of the COVID-19 crisis. As a result, the face-to-face LCC events scheduled for Northeast (March 23), Southeast (April 14) and Northcentral (April 16) LCCs and the associated community Next Steps workshops will be rescheduled.
The Austism Research Institute March 2020 Newsletter: Coronavirus Impact: Supports and strategies during school closings
Home all Day: Basic Supports and Strategies to Get Us Through and Keep Us Sane
Schedule changes and unexpected school closings present special challenges for individuals on the autism spectrum. Tune in to hear ideas for easing anxiety, scheduling daily activities, and staying busy during challenging times.
Special Sponsorship Event
Some very happy Central Indiana families will be attending the Indy Fuel Game on Friday, March 13th, thanks to the generosity of our sponsor, Anthem.
The Arc of Indiana was established in 1956 by parents of children with intellectual and developmental disabilities (I/DD) who joined together to build a better and more accepting world for their children. With over 30,000 members and 43 chapters in Indiana, and 140,000 members in over 700 chapters nationwide, the combined strength of local Arcs, state Arcs and The Arc of the United States makes The Arc the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families.
We are proud to share highlights of the impact we have made in the lives of people with I/DD and their families, thanks to the support of our chapters, members and donors, in our 2019 Annual Report.
Why is CENSUS 2020 so important for people with disabilities?
We interviewed Karen Tamley, the new CEO of Chicago’s Access Living, and former commissioner of the Chicago Mayor’s Office for People with Disabilities. She said, “If we have an undercount, like we did in 2010, we are at risk of losing critical federal funds that people with disabilities rely on.”
The ARC of Indiana Newsletter 3-1-20: We are The Arc Day! March 4th
In Celebration of Disability Awareness Month
Please join us on Wednesday March 4 as we kick off Disability Awareness Month with, We are The Arc Day!
We will be highlighting programs, sharing stories and spreading awareness of the important role The Arc plays in improving the lives of people with intellectual and developmental disabilities at the local, state and national level.
Share and like posts on social media and be sure to join us through out the day at apptogive.org/wearethearc for special real time question and answer sessions with leaders of The Arc of Indiana.
The 2020 Census is quickly approaching, and it is important that people with disabilities and their families complete the census. The Arc has developed free resources to support individuals and organizations in understanding what the census is, why it’s important for people with disabilities, and how to complete it.
LCC’s are excited for a productive 2020!
In the coming weeks and months HANDS in Autism® will be helping to facilitate regional meetings, summits, and community events (including Next Steps™ workshops) tailored to the expressed needs of each chapter. Next Steps™ is primarily designed for primary caregivers who have a child that has recently been diagnosed with autism spectrum disorder (ASD). However, this workshop is also beneficial for anyone interested in learning more about the diagnosis and the resources available. It is a discussion-based workshop in which the team from HANDS in Autism® provide information about diagnosis, adjusting to diagnosis, and how to make appropriate treatment decisions.
Due to the generosity of Kappa Kappa Kappa, Inc., attendance is FREE and a comprehensive manual is distributed during the workshop (one per household).
Diana Heyes, autism awareness champion
It’s a great thing to be embarking on a career as a learning disability nurse, supporting people with a learning disability, autism and their families.
But Diana Heyes, who now works for the south Cumbria adult team in Barrow-in-Furness, really goes the extra mile. Even before she qualified in learning disabilities nursing at the University of Cumbria, she had already become an autism champion.
A Visit to the Dentist for Your Child with Special Needs
Due to time constraints, behaviors, and cognitive or physical disabilities, a visit to the dentist may tend to fall low on the “to do” list for families with children with special health care needs. However, children with special health care needs are at an increased risk for dental issues, and so it is even more imperative that they receive routine dental care.
Busy days are ahead in the weeks to come. We are preparing for our annual think tank set for early April, recruiting speakers for the eighth annual international conference in Moscow, expanding our worldwide network, finalizing an edited book on anxiety in autism, and much more.
One way to keep up to date with the latest research in autism is to subscribe to ARI’s Autism Research Review International printed newsletter. You can review it for free: download a complimentary copy on our website and subscribe.
The 2020 session of the Indiana General Assembly has reached its half-way point.
Read our legislative update for all the news on bills The Arc of Indiana is championing and bills impacting people with disabilities that we are following.
The Division of Disability and Rehabilitative Services (DDRS) has begun the process of redesigning Medicaid waivers through the Bureau of Developmental Disability Services (BDDS).
Feedback sessions are being held in six cities around the state in February and March to present information about DDRS’s Initial Waiver Redesign Concept Paper and obtain feedback from self-advocates and family members.
At each of these feedback sessions – sponsored by The Arc, Sell-Advocates of Indiana and IIDC – there will be a meeting specifically for self-advocates and another specifically for family members. Information about the concept paper will be shared and facilitators will support a group conversation about the options raised in the concept paper and what attendees feel are the most important things that should come out of waiver redesign.
A View from My Window is The Arc of Indiana’s podcast, hosted by Michelle Fischer.
Listen in to our latest podcast as Michelle introduces you to LaMondré Pough.
LaMondré, who lives with spinal muscle atrophy type 2, is an inspirational speaker, trainer, consultant and coach who focuses on empowerment, diversity and entrepreneurship. He also serves as the chief business development officer for Ruh Global Impact, a disability inclusion consulting firm. Michelle knew she had to talk with LaMondré when she heard his mantra of Living Big, Living Full, and Living Authentic.
HANDS in Autism® is excited to march into 2020. The new decade represents multiple milestones of achievement for us, including the following:
- 15 years providing interdisciplinary training and resources, services and supports targeted at improving the quality of life, outcomes and access to services and supports for individuals with autism spectrum disorder (ASD) and other disabilities. Learn more.
- 10 years combating the stigma of ASD through the Art Expo. Learn more.
- 10 years facilitating a statewide initiative to explore the gaps that exist in services, supports and access through implementation of the Indiana Needs Assessment. Learn more.
- 6 years working in partnership with the Indiana Family Social Service Administration (FSSA) Bureau of Developmental Disabilities (BDDS) to facilitate the Indiana Interdisciplinary Autism Coordinating Council (IIACC) in reviewing state data and providing input on recommendations for change. Learn more.
- 10 years supporting local communities in identifying their ASD gaps and needs—and providing the support and resources needed to meet those needs through the implementation of the Local Community Cadres (LCCs). Learn more.
We’re inviting you to join us this year in celebration of these milestones—as well as continuing to support ASD in your community through participation and engagement in the LCCs.
Welcome to FV Indiana’s Guide to the Legislative Session. This year brings a “short session” that will begin on January 6, and is expected to last through March 20, 2020. This session will provide many opportunities for families to be involved, share your experience, and build relationships with legislators that will impact current and future decisions. This guide is intended to be a reference issue; in it you will find information on how a bill becomes a law, definitions and translations of acronyms and information on the House and Senate leadership. We encourage you to contact your legislators, make the effort to introduce yourself, share your perspective, and continue to build a relationship.
We hope the start of the new decade has been a good one for you and your family. As you can imagine, the Autism Research Institute (ARI) has many plans for 2020. We will continue to keep the autism community posted about our new initiatives and programs through our website, autism.org, and our e-newsletters. Stay tuned!
I would like to thank those who contributed to ARI during our end-of-the-year campaign as well as those who have supported us throughout the year!
Discussions, meetings, and research have taken place for several months regarding how Indiana’s Medicaid Waiver program can be redesigned to better meet the needs of individuals and families. The Bureau of Developmental Disability Services (BDDS) has released an initial concept paper on waiver redesign.
Welcome to the team!
Welcome our new Director of Events Ashley Schwartz. Ashley is a 2016 graduate of Anderson University, where she received her bachelors in marketing. Since graduating, she has worked in both marketing and special events roles within the Indianapolis area. When she isn’t working, you can find Ashley hanging out with her chihuahua, Phoebe. Ashley has a heart for Autism and is very excited to be joining our team.
Welcome Peak Community Services!
We are excited to share that Peak Community Services has joined The Arc family as the local chapter of The Arc in Cass and Pulaski Counties. With locations in Logansport, Winamac, and Knox, Peak Community Services’ programs include work and employment services, habilitation programs, supervised group living, community living, family living, and more.
Learn more about our new chapter at: peakcommunity.com
Wishing you and your family a Happy New Year!
Please know that throughout 2020, The Arc is here to help through our programs and services.
Sensory Friendly Santa
FREE- Sunday, December 15th 9-11 am
Glenbrook Square Macy’s Court
4201 Coldwater Road, Fort Wayne
Questions? Contact Matthew Jenkins, Youth and Family Director,
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 to: ClinicalResearchInAutism@autism.com.
Previous issues of this e-newsletter can be viewed at: www.ClinicalResearchInAutism.com.
Chase Winter’s Chill at FV Frost Fest! (En Espanol)
Family Voices Frost Fest is a day-long festival of food, games and music for ALL AGES this Saturday, Dec. 14, 11 a.m. to midnight, at Books & Brews Carmel, Indiana. Here’s what this special day holds in store:
* Books & Brews Carmel will brew a special beer just for FV Indiana. $1 from the sale of each FV Indiana’s special brew will be donated to the organization.
* You’ll find food and beverages (alcoholic and non-alcoholic), as well as a variety of board and card games and books to enjoy during your visit to Books & Brews, who will generously donate a portion of proceeds from food and beverage sales to Family Voices Indiana.
Autism Eye Newsletter: Children ’being re-diagnosed’ / ‘Some people overcome autism’ / Call for special clinics / Mum seeks answers for son’s death
Star of the Month: Thomas Keaney, proprietor of the TCES Group
The Terrace Pavilion, a large room overlooking the Thames at the House of Commons, was packed with seated guests. They were here to celebrate the twentieth anniversary of the TCES Group, a small collection of independent schools for pupils with SEMH (Social, Emotional and Mental Health) needs or autism.
Dame Esther Rantzen, the group’s patron, gave a polished and witty speech, but that wasn’t the highlight. The real stars were a series of pupils who got up one by one to talk with candour about their school experiences.
The ARC of Indiana Newsletter 12-8-19: Joint statement on abuse of Roncalli student with Down syndrome
“No voice is too soft when that voice speaks for others.” ― Janna Cachola
The Arc of Indiana, Down Syndrome Indiana and National Down Syndrome Society have issued a joint statement regarding the abuse of a Roncalli High School student with Down syndrome.
Click on the link to read the statement and to find resources from The Arc of the United States that address the issue of sexual violence against men with disabilities.
When parents first learn that their child has a disability, they may experience feelings of grief, including a sense of sadness and a feeling that the dreams they had for their child are lost. Others may experience anger, feelings of isolation, and other emotions associated with grief. All of these feelings are perfectly valid.
Allow yourself to mourn the loss of your original dreams, and know that acceptance and hope are sure to follow. When you are ready, you may begin to focus on your child’s needs and how your family will face challenges resulting from those needs. Gradually, as you understand your child’s needs and diagnosis, you will begin to cope with those needs to move forward.
Lawrenceburg will host Southeast Regional Autism Local Community Cadre Summit on December 13
Southeastern Indiana, in partnership with HANDS in Autism®, is gearing up for their Regional Autism Local Community Cadre (LCC) Summit on December 13. Thanks to coordination by ROD Schools, this free event will take place at the Ivy Tech Lakefront (500 Industrial Dr., Lawrenceburg, IN 47025).
The work of the LCC enables communities to identify autism spectrum disorder (ASD) needs, challenges and gaps in supports that are specific to their region and implement targeted strategies, training and resources that will impact the lives of individuals living in that community.
Register today to begin working with other passionate individuals with ASD, family members and professionals to improve the support, outcomes and access to resources for individuals with ASD. Contact HANDS in Autism with questions at HANDS@iupui.edu.
Tuesday, November 19 was Organization Day at the statehouse. Speaker Brian Bosma announced that he will be stepping down from that position after this legislative session and will not seek re-election. With our offices directly across from the statehouse, we had a first-hand view of the historic Red for Ed teacher’s rally.
The legislative session will begin on January 6 and must end by March 13. Following are links to information for our 2020 Public Policy Agenda.
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 to: ClinicalResearchInAutism@autism.com.
Star of the Month – Thomas Keaney, proprietor of the TCES Group
The Terrace Pavilion, a large room overlooking the Thames at the House of Commons, was packed with seated guests. They were here to celebrate the twentieth anniversary of the TCES Group, a small collection of independent schools for pupils with SEMH (Social, Emotional and Mental Health) needs or autism.
The ARC of Indiana E-Newsletter November 17, 2019 – Reimbursement of Out of State Medicaid Waiver Services
Effective November 8, providers of Home and Community Based Services for individuals with intellectual and developmental disabilities may receive reimbursement for services provided outside of Indiana in limited circumstances under Indiana’s Medicaid Waiver program.
Would you like to be inspired while helping ASK reach our fundraising goals? Check Out this Giving Story about our Director of Family Support’s son, Ben, and vote! You could help us win the funds we need to support even more families!
2019 Impact Awards – Champion Award Students Self-Advocates of Monroe County
John Smith, president of Students Self-Advocates of Monroe County, accepted the 2019 Champion Award at The Arc of Indiana and Self-Advocates of Indiana’s 2019 Impact Awards Luncheon on October 23rd.
The mission of Students Self-Advocates of Monroe County is to empower each other, educate peers, and enact change in the community.
UPCOMING LOCAL EVENTS
Congratulations to all of the 2019 The Arc of Indiana and Self-Advocates of Indiana Impact Awards recipients! Awards were presented at the Impact Awards Luncheon on October 23rd.
Thanks also to comedian Nina G and Michelle Fischer, our awards ceremony MC.
Over the next few weeks we will share stories about each of our award recipients.
A View into EGTI
October is Disability Employment Awareness Month – a perfect time to catch up with Megan Stevenson, director of The Arc’s Erskine Green Training Institute (EGTI).
Listen in as Michelle Fischer talks with Megan to learn about steps to enrolling in EGTI and how EGTI’s unique postsecondary training program is making employment dreams come true.
After you listen to the podcast, learn more at www.EGTI.org
A View from My Window is The Arc of Indiana’s podcast, hosted by Michelle Fischer.
Autism Eye e-Newsletter: Maleness and empathy / hate crime law / bullying / Labour schools policy / gut healing / moving song tribute
Star of the Month – Lisa Satira Brozek, autism mum & song lyricist
We’re grateful to Michael Stover, president of MTS Records, for telling us how mum Lisa Satira Brozek wrote a tribute to her autistic son, Cristopher – and it ended up as a worldwide music release.
She says: “Christopher is an amazing and kind human being… but because he cannot socially interact, it makes it hard for him to make friends. You may think he isn’t paying attention, but he understands every word you say, he can hear you, he sees you, he just can’t verbally express it.
“If he was able to tell us how he feels and express himself to me and to the world, I thought, what would he say? So one day I began to write…..and I wrote a song for my son.”
Musicians John Vento and Ron ‘Moondog’ Esser of Band Together Pittsburgh, a non-profit organisation that raises awareness of those with autism through music, got involved. So did guitarist/producer David Granati, keyboards player Hermie Granati and family friend Kelsey Roche, who wrote the melody.
Very proud to be invited to 10 Downing Street to meet with the Prime Minister’s Advisor on Disability and Welfare
IT’S TIME TO TALK ABOUT WHAT WE CAN DO……. AND NOT WHAT WE CAN’T!!
Yesterday I was invited to meet the Prime Minister’s Chief Advisor on Disability and Welfare – Jean-Andre Prager at 10 Downing Street.
I was given this rare opportunity to discuss Ability Today’s goals and vision for helping to provide a more inclusive world.
We discussed our roving reporter program and how we are empowering our volunteers to go out on assignments and report on the world around them. Raising self belief, confidence and motivation, and creating pathways to employment. Inspiring the wider community and showing what is still possible.
October is Disability Employment Awareness Month. At The Arc’s Erskine Green Training Institute, we work every day to make employment dreams come true! Congratulations to EGTI students and staff for a fantastic graduation ceremony, held Friday, October 4. The event included memorable speeches from four students, an inspirational message from Blair Milo, Gov. Holcomb’s Secretary for Career Connections and Talent, and a room full of supportive family and friends.
Check out the highlight video shown at the graduation event to get a taste of what is in store for future students: EGTI Graduation Video
ASK Founders Award Honorees recognized during the 2019 ASK Founders Breakfast on Thursday, October 3rdThe Special Kids Can’t Wait Coalition and Eskenazi Health Case Conference Initiaitive
It was a wonderful morning honoring those who have made such significant contributions toward transforming healthcare and special education for children with special needs in Indiana. Congratulations to our honorees, Eskenazi Health Case Conference Initiative and The Special Kids Can’t Wait Coalition. The ASK staff and Board of Directors would like to extend a special “thank you” to all those able to attend this inspiring event.
A Message from the Chief Science Officer
I am thrilled to share that Autism Speaks recently awarded more than $4.7 million in grants to 26 autism researchers at premier academic and research institutions.
These projects include a range of basic and applied science topics, including dedicated funding of $2.6 million to transition to adulthood, one of the biggest challenges facing people with autism and their families. This investment is critical to accomplishing our mission to deliver solutions that will enhance people’s lives and enable more people to have more meaningful days. Read more about these funded projects and the researchers behind them.
We are also working on other ways to get research findings into the hands of health providers and families. Through our Autism Treatment Network and ECHO Autism Primary Care, community providers are learning from specialists how to handle medical care and other concerns for autistic children. By learning best practices in screening for autism and helping reduce the wait for care, this program is helping children and families in their own communities.
The ARC of Indiana October 6 E-Newsletter:Special Kids Can’t Wait Coalition & Indiana’s First Steps program
ASK, About Special Kids, honored the Special Kids Can’t Wait Coalition at their annual Founders Breakfast on October 3rd, in celebration of the 30th anniversary of the passage of HB 1974, establishing Indiana’s First Steps, early intervention program for infants and toddlers with disabilities or at risk of disability. The coalition was formed to work for the passage of legislation to make access to early intervention services an entitlement in Indiana.
Sally Morris, The Arc of Indiana, who helped lead the coalition and worked with Senator Greg Server and Representative Shelia Klinker on behalf of The Arc of Indiana to pass HB 1974, accepted the award on behalf of the coalition and The Arc.
Kylee Hope, director of Indiana’s Division of Disability and Rehabilitative Services, received a proclamation made by Governor Eric Holcomb declaring October 3, 2019 First Steps Day.
Thank you to ASK for this celebration!
Free Upcoming Webinars
Thanks to you, Congress just passed the Autism CARES Act of 2019! The legislation now heads to the President’s desk to be signed into law.
The passage of Autism CARES ensures continued federal support for autism research, monitoring, training and services at the National Institutes of Health (NIH), Centers for Disease Prevention and Control (CDC) and Health Resources and Services Administration (HRSA). The legislation authorizes more than $1.8 billion in funding over the next five years and places an increased emphasis on reducing health disparities and improving services for people with autism throughout the lifespan.
Your voices and support helped achieve this accomplishment! Throughout this process, members of Congress have shared their gratitude for advocates, like yourself, who speak up and fight for critical legislation like this. We join them in thanking you for your dedicated advocacy.
Star of the Month – Alexis Quinn, autistic campaigner
Campaigner Alexis Quinn is pictured second from the left outside Number 10 Downing Street. She was there to hand over a petition with more than 200,000 signatures calling on the Government to end the scandal of autistic people being inappropriately detained in mental health hospitals.
Alexis, who has autism, knows first-hand what being shut away is like. She was detained under the Mental Health Act in 2012 and spent almost three-and-a-half years in different mental health hospitals. She says she was restrained more than 90 times and, on one occasion, was segregated (held in solitary confinement) for eight days.
The deadline to submit your ideas for the Infant & Toddler Access Challenge has been extended to October 1, 2019.
Parties eligible to apply include Indiana residents who are: individuals, teams, businesses and nonprofits. Ideas should be submitted on our online portal.
You are the agent of change in your community
We need passionate, committed individuals and ASD advocates like you to create change at the local level to positively impact individuals with autism spectrum disorder (ASD). You’re invited to be a part of the Statewide Local Community Cadre (LCC) initiative to increase ASD awareness, knowledgebase and community-wide growth in providing practical support for individuals, families, caregivers and professionals at the local level.
HANDS in Autism®, in partnership with local stakeholders is facilitating regional autism LCC summits across the State in order to expand, enrich and realign the work of the local cadres with other community-based and statewide ASD initiatives.
When my son was born with multiple disabilities, I vowed never to homeschool my child. Surely, I was not qualified to give my son a quality education at home. I wanted him to be taught by the best educators trained in special education.
By the time he was in third grade, he had an autism diagnosis, as well. With coverage for targeted therapies pending, I began to wonder if homeschooling was an option. I wondered if he could learn with me at home at least a couple of days per week, while working around therapy times. With butterflies in my stomach, I decided to try homeschooling.
Direct Support Professionals Appreciation Week, September 8 – 14, provided opportunities for providers, families, and people with disabilities to share their appreciation for the difference DSPs make in their lives.
Here are just a few of the stories shared during the week. Of course, a week is not enough! As the year continues, lets all remember to take a moment to thank DSPs for their hard work and commitment.
The Autism Society of Indiana – Relay for Autism in Fort Wayne.
INDIANAPOLIS (WTHR) – Anthem Insurance is backing away from cutting payments for autism therapy….at least for now.
A week after 13 Investigates reported on the cuts to Applied Behavior Analysis, the company said it has made the decision to reinstate the rates for the two ABA therapies that were decreased in July, to the previous rate.
But on December 1, the rate for one of the ABA therapies will go from $15/unit to $12.25/unit, an adjustment that is less than the original decrease. Rates for the other code will not be reduced, according to Tony Felts, Anthem Spokesman.
The Arc of Indiana will continue to monitor this issue.
The news comes as the state of Indiana joins a nationwide call for more Autism funding and research. 13 Investigates Reporter Sandra Chapman reveals why there is a new focus on the high numbers of minority children now diagnosed with Autism.
Finding the right path after a child is diagnosed with a special need can often leave a parent feeling lost and overwhelmed. This was the case for Britney after both of her sons were diagnosed with autism. She did not know what to do, or even where to start, until her son’s occupational therapist recommended ASK. Through ASK, Britney was connected with a parent liaison. She felt that this connection with someone who had gone through similar situations as her made her feel less alone. This relatable resource was exactly what she was looking for. Britney was then given the details and information to put her mind at ease. According to Britney, ASK services gave her a support system. She finally felt as though she was on the right track.
“As parents, we don’t know what we don’t know until we are given guidance from people who have had similar experiences. It is so helpful to hear from someone who can guide you when you’re lost.”
The ARC of Indiana September 1, 2019 Newsletter – Statement Regarding Anthem’s 35% ABA Rate Reduction
Recently, Anthem communicated to their provider network that several providers, including ABA providers, will be receiving rate reductions. Used as a scientific approach to understanding different behavior, applied behavior analysis (ABA) is a method of therapy used to improve or change specific behaviors.
This follows a 2011 rate reduction of 15-30% for ABA providers, with no rate increases during the years in between. Several providers report that Anthem has stated this reduction is non-negotiable.
The Arc of Indiana is concerned that this significant rate reduction will negatively impact ABA providers and individuals who can greatly benefit from ABA therapy. We are also concerned that these significant rate reductions will negatively impact other providers and recipients of those services. We believe that all providers should receive reimbursement that allows them to hire and retain a quality workforce and cover the true costs of providing quality services, including staff training and continuing education.
Sprint for Awareness focuses on increasing community awareness about autism spectrum disorder (ASD) during the back-to-school season. LCC members will direct this activity by completing a brief survey to identify initial targets for the initiative. In this survey, members will also share their availability to participate in this activity, and recommend others who might be interested. In just 2 minutes (estimated time to take this survey), you can help increase ASD Awareness to support Back-to-School efforts in your community!
Help The Arc understand what the future should look like for people with intellectual and developmental disabilities to be meaningfully included in their communities.
Through this survey, The Arc US wants to hear your perspective about how we can all create a world where people with intellectual and development disabilities receive the support, services, and care they need and the respect they deserve. Your responses to the survey, combined with perspectives from the field and additional conversations with staff and board, will help inform the future of The Arc.
LCC ASD Awareness Back-to-School Activity
Apply by August 26, 2019 at 5 p.m.
The Strong Start for Kindergarten Prize gives you the chance to share your ideas for improving this transition. The best ideas — from early learning programs, school systems and more — will win prizes up to $25,000 and be shared statewide to boost outcomes for all children in Indiana.
Today, the Infant & Toddler Access Challenge invites creative thinkers to help Indiana solve a critical early learning problem: lack of high-quality care options for our youngest children. Through this challenge funded by Indiana’s Preschool Development Grant, innovators will reimagine the business and access model for providing quality early learning to children from birth through their third birthday.
Thanks to the Indiana Governor’s Council for People with Disabilities families and caregivers of children and youth with special healthcare needs and/or disabilities canattend the Family Voices Indiana Heart to Heart Conference for free.
This comes as great news as more families have been able to register for the day-long event.
Now it’s your turn to do the same. Simply click this link to join us October 3 at the Ivy Tech Conference Center in Indianapolis for 12 educational sessions, a keynote address from self-advocate Mark Hublar, lunch and the opportunity to visit our nearly 30 exhibitors.
If you’d like to come, it’s important that you register. We want the event to go off without a hitch, so having an accurate number of attendees will be critical to our success. It only takes a few minutes and will help us greatly.
We look forward to seeing you October 3 for Heart to Heart 2019!
A View into Medicaid Waiver Redesign
with DDRS Director Kylee Hope
Several state initiatives are underway to work towards the goal of redesigning Indiana’s Medicaid Waiver program. Listen in to our latest podcast as Michelle Fischer talks with Kylee Hope, Director of Indiana’s Division of Disability and Rehabilitative Services, and The Arc of Indiana’s Executive Director, Kim Dodson, about these efforts designed to improve programs and services for people with I/DD and their families.
Help! I have insurance, and I’m still drowning in medical bills!
Medical bills for children with special healthcare needs add up fast. Even when a family has private insurance, co-pays and deductibles can be overwhelming on the budget. There are, however, programs in addition to private insurance that offer relief to families. The purpose of this article is to highlight a few of these programs.
The Arc of Indiana is working with The Arc US to gather information on barriers that professionals and families face when trying to get services for individuals that have Intellectual and/or Developmental Disabilities and co-occurring mental health issues. We are hoping to develop training materials and possibly offer other types of training for families and professionals. Please offer your input through this survey. If you have thoughts outside of the survey questions please email them to Jill Smith at email@example.com.
We are excited to launch our new ASI website! With the new look it’s easier to find information about our ASI programs, resources, events, how to support ASI and more! Thank you SirChuy Creative for your time in creating the new website.
ASK August 2019 Newsletter
August is National Back to School Month
For many families the end of summer and the start of a new school year brings about a mix of emotions. If you would like support or resources please call and speak to an ASK Parent Liaison at (317)257-8683.
For those wanting more information on Article 7/ Indiana Special Education, four trainings are available on the About Special Kids website. These can be found under Training/ On-line Training Article 7 . We also have Webinars covering several education related topics such as Requesting a Special Education Evaluation and the Transition Case Conference. Click here for Webinar titles and descriptions.
Indiana’s Caregiver Support Services funds are now available for the state fiscal year 2020. The purpose of Caregiver Support Services is to provide short-term relief for the primary caregiver of an individual that meets the state definition of Intellectual and Developmental Disabilities level of care.
The Caregiver Support Services is 100% state funded and is available on a first-come, first-served basis. If you have applied for or received Caregiver Support Services in the past, a new application must be completed to begin to or continue to receive funds. Any pending applications where voided the last week of June and a new application must be submitted.
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 to: ClinicalResearchInAutism@autism.com.
This month we have been sharing information about self-advocacy and educating Hoosiers about voting rights. In this newsletter, you will find this month’s highlights and ways you can get involved in the self-advocacy movement.
Indiana’s Division of Disability and Rehabilitative Services (DDRS) is engaged in a two year process to redesign Medicaid Waivers for individuals with intellectual disabilities. DDRS is seeking input from families, providers, and people with disabilities. Please respond to DDR’s Medicaid Waiver Survey.
Children in Foster Care System File Class Action Lawsuit against Indiana Department of Child Services
Every child counts. Every child is valuable; every child deserves safety, security, and a sense of well-being; every child needs to be loved, supported, and provided every advantage society has to offer to allow them to succeed.
It is the work of Indiana Disability Rights to use its resources to identify, prioritize, and advocate for the most vulnerable Hoosiers throughout their life. Every one of us is responsible for what happens to Indiana’s children. Advocating for the most vulnerable children is how IDR takes responsibility.
Enjoying the Ordinary
Article written by Carrie Le, Health Information Specialist
When Tommy and I decided that I would be a stay-at-home mom, I thought about what my days would look like – taking care of the house, playing with our kids, cooking and baking all day… Summers would be pretty relaxed – sleeping in, spending time outdoors laughing and enjoying the sunshine… My days can be like that now, but when Jet was born, we got some unexpected extras – weekly appointments, daily stretches, g-tubes, equipment, phone calls, appointments with specialists, medications… When Hawk came along that added some other extras – endless water refills, more medications, more weekly appointments, sensory issues… Sometimes the things I expected back then just don’t happen every day.
The Arc of Indiana and Self Advocates of Indiana were honored to participate in a ceremonial bill signing at the Governor Eric Holcomb’s Residence last week in support of Senate Enrolled Act 380 and Senate Enrolled Act 112.
SEA 380 adds Supported Decision Making (SDM) as an option for people with disabilities to get the support they need. It also requires less restrictive options, like SDM, be considered before a full guardianship is put in place. This new law will provide an option for a person to keep their legal rights to decision-making, but with a trusted team of supporters that they choose.
SEA 112 prevents discrimination against people with disabilities regarding organ transplants.
A Special Thank You!
ASK Parent Liaisons are busy this summer assisting families in order to fulfill our mission: helping children with special needs live better lives by educating, empowering, and connecting their families. We are also actively preparing to support families as the new school year approaches.
Although we provide information and referral to families of children with special needs, we assist first and foremost, by providing emotional support to families through our parent to parent model. ASK is committed to understanding each families unique needs and concerns and working to remove barriers to allow children to reach their full potential.
Congratulations and Happy Retirement – ASK Deputy Director, Jane Scott
Salute to a Leader and Champion Advocate for Families of Children with Special Needs
Jane has earned every inch of the recognition and accolades for her leadership and contributions to ASK for its growth and development as an essential statewide partner to Indiana’s families of children with special needs. Throughout her tenure, Jane has been a leader and champion advocate for children with disabilities and their families. She has served on numerous councils and work groups to help strengthen parents in their roles as advocates for their children, and she has developed partnerships that have been instrumental in supporting ASK’s growth as a statewide free information and resource for all Hoosier families of children with special needs.
The Arc of Indiana June 23 Newsletter – Medicaid Waiver Update
Indiana’s Medicaid Waiver program for people with developmental disabilities provides home and community-based supports to people with intellectual and developmental disabilities and their families. Following is the latest waiver update from the Division of Disability and Rehabilitative Services.
The summer issue of The Arc News in Indiana is at the printer, but you can read it online now. Info in this issue includes articles on the effort to redesign Indiana’s Medicaid Waiver program and an overview of the current waiver program, the Employment Workgroup’s study to transition employment from sheltered workshops, Supported Decision-Making, and how The Arc Master Trust helped make a beneficiary’s dream vacation come true.
College? Have you thought about your child with special healthcare needs going away to college? It is a scary thought for any parent, but particularly for the parent whose child has additional challenges! According to the Institute for Higher Education Policy, one in eleven freshman college students report some sort of disability. However, despite the disability many complete their education at the post-secondary level, whether at a trade school or through a two or four-year college program.
1102 Task Force Reconvenes
The Task Force for the Assessment of Supports and Services for People with Intellectual and Developmental Disabilities, also known as the 1102 Task Force, is reconvening to monitor the implementation of the task force’s overall recommendations. The meeting will be held:
Thursday, June 13, 2019
9:00 a.m. – 12:00 p.m.
No public testimony will be taken, but the meeting is open to the public. The meeting will be streamed live. Click here to watch on Thursday.
NAA’s Give A Voice program provides a 9.7″ iPad to qualifying individuals along with the Avatalker AAC app, AppleCare+ and a protective case. Learn more about this life-changing program on our website.
Please join us in thanking Jenny Good, Administrative Operations Manager, for her five years of service to The Arc, as she moves on to new opportunities. Jenny provided invaluable service to The Arc of Indiana, The Arc of Indiana Foundation and ICEArc. She will be missed, but we wish her nothing but the best!
School is out soon and summer will be here. The summer months provide for some of the most memorable moments for families. It can also cause some stressful situations for families with children with special health care needs. Here are some articles that provide tips and suggestions from other families:
It’s been an exciting time for all of us at ARI with the celebration of our 25th annual think tank and the release of our new website at Autism.org. Moving forward with an eye toward empowering individuals, parents, and professionals with tools and information they need is what we do at ARI and I hope you’ll check out opportunities to participate in research, register for upcoming webinars, utilize our online tools, and watch free recordings of past talks.
Learn About, Supported Decision Making
Supported Decision Making agreements are formalized, written documents between an individual and their supporters who have agreed to help them make decisions.
Under Indiana’s new law, those agreements must have at least one supporter and list what decision-making areas the supporter with assist with. Each SDM agreement must be in writing, dated and signed by the adult in the presence of a notary.
School rainforest creators
How many teaching assistants can create a rainforest experience that sparkles with light? That’s just what Georgios Ignatiou and Krishna Ellsworth, pictured above, have done at Grafton Primary School in Islington, London.
Walking for Dreams is just around the corner and we would love to have you join us. Gather your family, and your dog, and come out for a fun day with ASK.
When: May 19, 2019
Registration – 1:00 p.m.
Walk – 2:00 p.m.
Where: Walking for Dreams registration area and beginning and ending of the Walk will be at the north end of the Canal at Buggs Temple. Buggs Temple is located at 337 West 11th Street between Meridian and Dr. Martin Luther King Drive.
You can register to walk at www.walkingfordreams.org.
We are The Arc – The Arc of LaGrange County
Friday, we visited The Arc of LaGrange County in northeast Indiana. A dedicated staff provides employment and day programs, residential services and respite care through a unique respite care home. They also provide a baby monitoring program at no charge. Once a month, new parents receive information on developmental milestones infants should be reaching and consultations are offered to families if there are any concerns. Infants and toddlers who need supports and services are referred to First Steps, Indiana’s early intervention program.
INDIANAPOLIS – On Wednesday, April 24, Governor Eric Holcomb signed legislation recognizing Supported Decision-Making Agreements as a valid way for someone to demonstrate decision-making capacity in Indiana and requires Less Restrictive Alternatives (LRAs), including Supported Decision-Making to be considered before a court will appoint a guardian.
The Senate Appropriations Committee approved an amendment to the state budget that would provide a $10 million “bucket” for FSSA to fund direct care providers, including the FSW waiver, CIH waiver, group homes, First Steps and other providers.
Here is the breakdown between the House and Senate versions of the budget:
House – $20 million per year
Senate – Current $11 million level of spending, plus money form the “bucket.”
House – No additional money
Senate – Money from the “bucket”
House – No additional money
Senate – No additional money
Study calls for interventions for adults | High noon at High Court | Charity slams Labour over neurodiversity | Potential treatment for Fragile X
Read More for Upcoming Local Events, Northeast IN Autism Support Groups, and Local Autism Services and Programs.
Important deadlines are coming for the 2019 session of the Indiana General Assembly. All committee meetings must be done in the House on April 9th and in the Senate on April 11.
Our work continues to secure funding to increase wages for Direct Support Professionals. Your phone calls and emails are still needed!
It’s no secret that a sibling of a child with disabilities or a chronic illness faces unique challenges. Their brother or sister naturally receives a bigger share of the attention, and the sibling may have feelings of resentment, jealousy, anger, worry and other negative emotions. However, their unique situation also allows them to develop positive qualities. Family Voices Indiana sat down with an adult sibling, Lanea Bonney, for a chat about her experience as a sibling to a brother with multiple medical and developmental challenges.
Note: When parents tune in the needs of each child, they can help ease difficulties. We’ve offered some resources for families at the end of this article.
Congrats to Family Advocates Ofelia and Cyndi
Congratulations to Ofelia Jimenez and Cyndi Johnson, family advocates for The Arc Advocacy Network, who were honored last week for their advocacy and volunteer efforts in their community.
Ofelia received the Individual Adult Volunteer Award from Hammond Indiana Mayor Thomas McDermott Jr for her work with Grupo Hope, a parent support group based in East Chicago, IN that provides information and training to parents of children with disabilities and social activities for children and their families.
In Honor of World Down Syndrome Day March 21, 2019
Thanks to all the families, advocates, and professionals who make a difference
in the lives of people with Down syndrome.
Nataly Jimenez, daughter of Ofelia Jimenez, family advocate for The Arc Advocacy Network asked us to share her message on World Down Syndrome Day,
“I am dancer, a singer, a warrior, a believer, and I have Down syndrome. Same dreams, same hopes, same fears, what is the difference?”
Thank you, Nataly, for the difference you make in the world each and every day.
Call to end benefit reassessments
People with learning disabilities should be exempt from benefit reassessments. That’s the view of Dan Scorer, head of policy for the charity Mencap…
We are The Arc Awareness Day!
On Wednesday, March 6, as part of Disability Awareness Month, we want to raise awareness about The Arc across the state in our first We are The Arc Awareness Day.
Have you received services from The Arc of Indiana, The Arc Master Trust or Erskine Green Training Institute?
Do you work for a chapter of The Arc, or are you a volunteer or board member?
If you use social media, on March 6, share how The Arc has made a difference in your life with the hashtag #WeareTheArc.
Autism Society of Indiana: Excited to Announce Relay4Autism in Highland!
We are excited to announce we will be partnering with the North Township Trustee to have a Relay4Autism in Highland!
August 3, 2019
9:00am to 1:00pm
Wicker Memorial Park
8554 Indianapolis Boulevard
Highland, IN 46322
Relay4Autism will have a Resource Fair with vendors ready to talk with you about their local autism services and resources, like North Townships Emergency Identification Bracelet Program. While learning about autism, individuals and families affected by autism can have fun with tons of entertainment: carnival games, balloon artist, face painters, music, sports area, craft area, sensory area, emergency vehicles, and lots more! Something for everyone!
Northeast Indiana Autism Insider
Check out our newsletter to learn more about upcoming events, northeast IN autism support groups, and local autism services and programs!
First Steps, ABLE Accounts Bills Scheduled for Ways & Means Hearing
HB 1216, legislation to increase funding for Indiana’s First Steps, early intervention program; and HB 1350, legislation to create a tax credit for contributions to Indiana ABLE accounts, will be heard in the House Ways and Means Committee, Tuesday, February 5, 10:30 a.m. in Statehouse room 404.
Please contact your state representative and ask for their support of HB 1216 and HB 1350. This is particularly important if your representative is a member of the House Ways and Means Committee…
Join the ASK Team: Parent Liaison Opening
About Special Kids (ASK) is currently hiring a 20 hour per week Parent Liaison. This staff position will support our efforts state wide and will provide information, one-on-one educational training, and support to families of children with special needs. The positions require reflective listening skills, understanding of individuals from diverse cultures, ability to communicate effectively both on the phone and through written email and letters, and a basic understanding of the services and supports available to children with disabilities and their families. The ideal candidate is passionate about advocating and working with other parents to improve outcomes for children with special needs. This position will be 20 hours per week. Other benefits include 9 paid holidays per year and paid time off for sick and vacation time.
FORT WAYNE, Ind. (WANE) – In a true example of Christmas magic, Austin Maners, 4, and the mall Santa that fed him cookies and milk in a viral photo were reunited.
Austin’s mom, Beth Salzbrenner took him to Glenbrook Square Mall Sunday to get a special picture with Santa. While they were there, they asked if Santa would take a photo while pouring “milk” (formula) into Austin’s feeding tube that he relies on.
Salzbrenner then posted the photo on her Facebook page, where it quickly went viral.
Welcome to FV Indiana’s Guide to the Legislative Session. This year brings a “long session” that will begin on January 3, 2019, and is expected to last through April 29, 2019. This session will provide many opportunities for families to be involved, share your experience, and build relationships with legislators that will impact current and future decisions. This guide is intended to be a reference issue; in it you will find information on how a bill becomes a law, definitions and translations of acronyms and information on the House and Senate leadership. We encourage you to contact your legislators, make the effort to introduce yourself, share your perspective, and continue to build a relationship.
Watch FV Indiana and other sources for action alerts as the session progresses.
If you have information about the session to share please call us at 844 F2F INFO or email firstname.lastname@example.org.
Happy Holidays from The Arc! May the holiday spirit be with you and your family today and throughout the New Year.
You still have time to make a donation to help those affected by autism find meaningful jobs in Indiana. Our ASI #GivingTuesday Campaign will go until December 15th!
There are three ways to give.
- Facebook Fundraiser on ASI’s Facebook page
- Go to our website www.autismsocietyofindiana.org at the top right donate button
- Send a check made out to:
Autism Society of Indiana
1800 N. Meridian St. Suite 600
Indianapolis, IN 46202)
When you make a donation it will 100% STAY in Indiana! We appreciate your continuous support by making sure every individual and every family affected by autism in Indiana will receive high-quality services they deserve!
Autism Eye Star of the Month
Jonathan Baron, Dance Teacher
Jonathan Baron has achieved such success in teaching dance to children with autism that he has scooped an Inspirational Teacher Award. The dance teacher at Hillingdon Manor School in West London won the accolade at this year’s National Association for Special Educational Needs (Nasen) Awards.
He introduced dance to the school to provide an expressive outlet to help students develop skills on and off the dance floor. His lessons are said to have helped provide structure and familiarity, as well as boosting individuals’ well-being, building muscle memory, balance, body awareness, sensory co-ordination and spatial awareness. His support is also said to have helped each dancer’s self-belief and given them more confidence to flourish.
In 2013 he founded street dance group Autism With Attitude at the school. In May this year the group, pictured above right, won second place in the European United Dance Organisations Championships in Germany. They were the first special needs dance group to compete in the finals, with judges apparently unaware of the students’ autism.
To help students overcome anxieties over making the trip, the group visited Heathrow Airport, where staff helped to familiarise them with check-in and security procedures. They also had the opportunity to experience flight conditions in a flight simulator.
Jonathan told Autism Eye: “The approach I have to my students is similar to the way I myself have been taught. I teach them like they are no different to anybody else and time and time again it has shown to work wonders for their development.
“At the end of the day students do not wish to be treated differently because of their autism. Our approach, ‘you can achieve anything if you work hard enough for it’, has resonated really well with all students and is largely the reason they have become so good so quickly.”
Cruising for Dreams
From the moment you cross the gangway, you’ll feel as though you’ve been swept away to the beautiful Greek Isles aboard a luxury cruise liner. Enjoy an evening of relaxation and fun with a Greek-inspired dinner, deck games, silent auction, art gallery, and more!
Cruising for Dream supports Erskine Green Training Institute in providing post-secondary vocational training opportunities for people with disabilities. Since EGTI’s doors opened in 2016, over 100 students have completed the program and the employment rate for graduates is consistently over 80%.
VIP Tickets include admission to the VIP Reception inside EGTI from 5:30 – 7 pm.
The reception will allow guests to meet current students and tour the EGTI classroom!
Vibes | A life-changing tool for sound sensitivity
Know someone on the spectrum that’s sensitive to sound? Tired of bulky earmuffs that prevent them from being able to hear anything at all? Vibes Hi-Fidelity Earplugs (as seen on ABC’s Shark Tank and in Autism Parenting Magazine) are reusable earplugs that lower the volume of your environment to a more comfortable level, but still allow you to hear everything around you clearly. Plus, Vibes come with three sizes in each package, and their clear design makes them much more discreet than earmuffs or bright foam earplugs.
You can use promo code “NAA2018” to get 15% off plus free shipping when you order from Vibes’ website.
Click here to learn more about Vibes Hi-Fidelity Earplugs and how they can be life-changing tools for individuals on the spectrum.
Cords that clip onto the ends of the earplugs and allow them to be hung around the neck are available here.
Autism Link to Post-Traumatic Stress
Many autistic people might have some form of post traumatic stress disorder (PTSD), researchers believe. They are investigating whether people with autism are more vulnerable to PTSD. Many autistic people might have some form of post traumatic stress disorder (PTSD), researchers believe. Dr Connor Kerns: she says there should be better assessment of post traumatic stress disorder in people with autism Among them is Dr Connor Kerns, assistant professor of psychology at the University of British Columbia in Vancouver, Canada. She believes that PTSD in autism is more common than reported in most studies to date. Very stressful, frightening or distressing events can cause PTSD, which is an anxiety disorder. Kerns says most research has either suggested PTSD rates are very low in autism at between 0 per cent and 3 per cent, or failed to make any assessment. Learn More
Happy Holidays from ASK
During this special time of year, we would like to wish you and your family a very happy holiday. Thank you for letting us get to know you and your family and allowing us to be a small part of your journey. We look forward to a wonderful 2019 and continuing to help families of children with special needs.
Educational Perspectives Survey
Within this survey, Indiana educators and families are being asked their personal views regarding the desirability and feasibility of students with disabilities being included in the general education setting. This survey will be distributed annually to determine if there is a shift in attitudes and beliefs over time in providing equitable access to students with disabilities in general education settings.
Network of 200 Genes Linked to Autism
Researchers have discovered a network of more than 200 genes linked to autism.The findings are part of a research programme led by the University of Toronto’s Professor Benjamin Blencowe.Researchers have discovered a network of more than 200 genes linked to autism. Researchers Thomas Gonatopoulos-Pournatzis and Professor Benjamin Blencowe, whose work has identified more than 200 genes linked to autism. The scientist said the work has revealed how very short segments of genes with links to autism become spliced. Network of 200 genes key to brain wiring and behaviour. The network of more 200 genes works to control the splicing.That process diversifies protein molecules in the brain and other parts of the body.Toronto scientists showed previously how when this process is disrupted it is closely linked to altered brain wiring and behaviour found in autism. Researcher Thomas Gonatopoulos-Pournatzis led the study. He said understanding how the gene segments become spliced means “you can potentially target it using rational approaches to develop therapies”. Scientists have linked hundreds of genes to autism. This makes its genetic basis difficult to untangle. Alternative splicing of small gene fragments, or microexons, has emerged as a unifying concept in the molecular basis of autism.The concept emerged after scientists discovered the splicing had been disrupted in a large proportion of people with autism. Microexons affect the ability of proteins to interact with each other during the formation of neural circuits in the brain.They are especially critical because of the role they play in combining proteins during the splicing process. Microexons perform a type of microsurgery on proteins to alter their function. Learn More
ASI Giving Tuesday
Next Tuesday is #GivingTuesday!
Greg Boyce, Executive Director talks about our ASI #GivingTuesday Campaign asking for help to create a scholarship fund for individuals with autism find meaningful jobs!
All the money donated will 100% STAY in Indiana!
CDC Resources, Hoosier Prairie Arc, is accepting applications for Executive Director.
CDC Resources Executive Director Job Announcement
Kim Opsahl to Serve as DDRS Associate Director
Kim Opsahl, who began her career in the disability field as a direct support professional in college, has been appointed to serve as the assistant director of the Division of Disability and Rehabilitative Services.
In their announcement, DDRS noted, “Kim brings over 20 years of experience working with state government and advocating on behalf of various programs and services to support Hoosiers with disabilities to this new role. Most recently, she worked with the American Network of Community Options and Resources as the director of state partnerships and special projects. In this national role, she served a liaison for ANCOR’s State Association members and provided subject matter expertise in a number of areas including Medicaid home and community-based services. Prior to working with ANCOR, she served as the president/CEO for the Indiana Association of Rehabilitation Facilities. Kim earned her law degree from the Indiana University Robert H. McKinney School and is admitted to practice in the state of Indiana.”
Kim currently serves on the advisory committee of The Arc Master Trust and has joined us as a chef at Indy Cooks for The Arc.
Hope Dashed Over Medical Cannabis
HOPES DASHED OVER MEDICAL CANNABIS
The mother of a young boy with epilepsy says new prescribing guidelines for medical cannabis are so restrictive “almost no-one” will get it. The law changed on 1 November to allow access to medical cannabis under prescription in the UK. However, Hannah Deacon, who fought to give her son medical cannabis, says guidelines on prescribing it are far too restrictive.The mother of a young boy with epilepsy says new prescribing guidelines for medical cannabis are so restrictive “almost no-one” will get it. Hannah Deacon with son Alfie: “Without access to this medicine his epileptic seizures will come back,” she says. As a result, she says thousands like her have had their hopes dashed since the drug became available on prescription.150 seizures a month before the change in the law, Deacon had received a special temporary licence to give the drug to six-year-old son Alfie Dingley. He had been suffering 150 seizures a month. But she said the change in the law meant the Government took away the temporary license.They said he no longer needed the license because a doctor can now write him a prescription, as with any other medicine. Learn More
Get Out & Vote!
Be sure to vote on Election Day, Tuesday, November 6!
Visit our Public Policy Advocacy Center to find election information, including candidates in your district and where to vote.
2018 Founder’s Breakfast
About Special Kids held it’s 2nd Annual Founders Award Breakfast on November 1st. This year we honored two Indiana companies, No Label at the Table and BraunAbility. We were also pleased that Indiana Lt. Governor Suzanne Crouch, who chairs the Intellectual and Developmental Disabilities Task Force, was able to join us and speak about the work of the Task Force. She and ASK Board President, Joshua Pascoe, presented the awards to our honorees.
Antibiotic Tested as Autism Treatment
Researchers from the Cincinnati Children’s Hospital Medical Center, the University of Pittsburgh, and the University of Missouri, think the antibiotic may help to treat brain inflammation. Dr Logan Wink is an associate professor in psychiatry at Cincinnati Children’s Hospital. Wink, who leads the study, said minocycline “is known to have direct neuroprotective effects, as well as anti-inflammatory properties”.Health firm Quadrant Biosciences is helping to fund the work. It will collect saliva from people involved in the study to assist with its research on the genetics of autism. Learn More
Join Our Team!
Area Support Coordinator (Part-time, Southwestern Indiana)
Providing support for individual and families affected by autism through education, advocacy, support groups and/or service referrals. Making sure that individuals and families affected by autism get the highest quality service available in their local area. Learn More
Career Specialist ( Part-time, Indianapolis)
The career specialist is responsible for working with individuals affected by autism who are looking for meaningful employment by providing the comprehensive, coordinated, effective, efficient and accountable services needed to prepare for, enter, engage in and retain employment consistent with each individual’s strengths, resources, priorities, concerns, abilities, capabilities and informed choice. Learn more.
2018 Election Update
Whose Leading Indiana
After all the campaigning, the 2018 elections are now over, and new leaders, as well as incumbents, will be leading Indiana. Here is an overview of the 2018 election results.
Republican Mike Braun beat out incumbent Democrat Joe Donnelly with a margin of 52-44. This leaves Republicans in control of the U.S. Senate.
Indiana’s Senate Delegation
Todd Young and Mike Braun
Not too much change up happened in Indiana’s Congressional races as Representatives Visclosky and Carson are the only Democrats representing Indiana in Washington, D.C. However, two rookies have joined their Republican colleagues to represent the Hoosier state in our nation’s capital – Jim Baird and Greg Pence. A blue splash was made in Congress as the Democrats have now taken control of the U.S. House of Representatives, winning the majority in the lower chamber.
Indiana’s Congressional Delegation:
District 1- Peter Visclosky
District 2- Jackie Walorski
District 3- Jim Banks
District 4- Jim Baird
District 5- Susan Brooks
District 6- Greg Pence
District 7- Andre Carson
District 8- Larry Bucshon
District 9- Trey Hollingsworth
Statewide Elected Officials
At the state level, Republican women swept the podium.
Secretary of State
Also on the ballot was a key question asking voters if Indiana’s Constitution should require a balanced budget. More than 71% of Hoosiers supported the measure.
Indiana’s Senate Democrats gained a new senator and defeated a long-time Republican incumbent. Jon Ford beat Mike Delph to represent Senate District 38 at the Statehouse. Ford is the first openly gay lawmaker to be elected to serve in the General Assembly.
The Senate Republicans still maintain their Super Majority with 40 Republicans to 10 Democrats.
Indiana House of Representatives
House Democrats picked up at least two more seats, inching closer to breaking the Republicans Super Majority. With some delays in vote counting in Northwest Indiana the results are still out to see if Republican incumbents Julie Olthoff and Ed Soliday will remain in the Statehouse.
- Find Your Local, State and Federal Representatives
- Sign-Up to Receive Legislative Updates & Action Alerts from The Arc of Indiana
- 2019 Public Policy Agenda
- 2019 Public Policy Agenda Executive Summary
Infants’ pupil responses may help predict later ASD
The pupillary responses of infants to changes in light may help researchers diagnose autism spectrum disorders (ASD) very early in life, according to a new study. Read More
Study finds no effect on metformin on memory in individuals with ASD
Increasing numbers of individuals with autism spectrum disorders (ASD) are taking metformin to counteract weight gain caused by antipsychotic drugs such as risperidone (Risperdal). While studies differ as to the results of metformin on memory-with some reporting that it enhances memory, and others reporting that it impairs it-new research suggests that it has neither a positive nor a negative effect on memory in individuals with ASD. Read More
2019 Legislative Session Organizational Day
The Indiana General Assembly will meet at the State House on Tuesday, November 20, 2018 for the 2019 Legislative Session Organizational Day. Both the Indiana House of Representatives and Senate will be in session that day. It is a good day to visit with your legislators before the actual 2019 Session begins in January.
The Time Is Now!
Right now, there’s an opportunity to provide input to the ID/DD task force. The last time they asked for input on this level was in 1997; it’s for the purpose of gathering input to prepare a comprehensive plan for implementation of community-based services provided to people with intellectual and other disabilities.
Meetings are being held around the state, so please try find time to share your thoughts and perspectives. Often, providers have the time to provide input. They do it during their paid work day. The state hears from them….sometimes only from them. It is imperative that families find time to provide input on policies and procedures that affect our daily lives.
They accept public comments (limited to two minutes each) at these meetings.
If you don’t have the time or transportation to attend them in person, you can watch online HERE.
You can also submit written comments via email to Kristina.Blankenship@fssa.in.gov
Art & Autism. Autism & Art. Meet Jigsaw Grant…
Emerging as one of the most notable young artists of the new millennium, Grant Maniér (maun-yay), a young talented Eco-Artist combines his two worlds: autism and art. His obsession for paper became his form of art therapy.
Six Ways to Support an Autism Family
Autism can be a tricky disability because it isn’t easily understood. It isn’t always obvious. It presents differently in each person and the symptoms and behaviors can change from day to day. You don’t need to be a behavior expert or psychiatrist to support a family with an autistic member. Here are some ways you can support an autism family, even if you have no knowledge of autism. Honestly, these are just great ways to support a young family, disability or not. Read more…
What You Need to Know About Neurodiversity
Early Learning Champion Alert:
Is a communication and collaboration gap holding back Hoosier children? In our newest “Mile Markers” report, Early Learning Indiana explores how early childhood programs and elementary schools could more fully align.
“Mile Markers: Smoothing the transition from Pre-K to Elementary School,” urges greater continuity between early learning and K-3 standards, assessments, curricula and professional development standards; the collection of longitudinal data across the two systems to better track growth; and the coordination of kindergarten transition efforts between early education programs and schools.
“Right now we have two very different systems that often don’t support one another – and we are losing opportunities because of it,” said Dr. Karen Ruprecht, Early Learning Indiana’s Director of Research and Practice. “By making some policy changes to line up Indiana’s early education system with our elementary system, we can achieve savings and ensure better outcomes for our kids.”
In 2016, Indiana spent $24 million in kindergarten remediation, the most spent on any grade level.
This is the third in a series of in-depth policy briefings examining different challenges and opportunities surrounding Indiana’s On My Way Pre-K program. The series supplements Early Learning Indiana’s “On the Road to Pre-K Expansion” roadmap, which was released in June.
Funded through a grant from the Joyce Foundation, the full issue brief and additional reports can be viewed here.
Please take a few minutes to review this policy briefing and share it with your friends, colleagues and early education advocates. Also, please encourage them to visit our advocacy page and sign up to be an Early Learning Champion so they can receive information and alerts like this.
Thanks for all that you do for Indiana’s children and families!
– Early Learning Indiana
Rare Genetic Mutation May Give Insight into How the Brain is Wired
Did Chinese scientists find autism’s missing puzzle piece?
Time to renew your Autism Awareness License Plate!
We appreciate your generous support in purchasing or renewing your Autism Awareness License Plate!
When you purchase an Autism Awareness specialty license plate for your motorcycle, passenger vehicle, or truck, you are directly helping the Autism Society of Indiana (ASI) to provide continuous support and training for Indiana families and individuals living with autism. More importantly, you are spreading autism awareness throughout the community, which starts conversations about autism along with the willingness of those wanting to help and support everyone affected by autism.
ASI receives $25 from each purchase which supports our programs around Indiana, and helps us to provide services and supports at no cost to individuals with autism and their families.
Follow this link for more information about purchasing or renew your Autism Awareness License Plate!
Giving Tuesday – Autism Research Institute
2017 marks the Autism Research Institute’s 50th Anniversary… 50 years of serving the autism community and promoting and supporting research. Later this month on #GivingTuesday, November 29th, we are launching #Give50, a campaign to raise support in honor of this milestone.
Click here to donate now!
All IN 4 Pre-K Coalition
With the General Assembly continuing to debate the expansion of high-quality pre-k in Indiana, the All IN 4 Pre-K coalition is excited to share new support for this movement and two easy things you can do to advance this cause.
In the last week, both United States Senator Joe Donnelly and Lieutenant Governor Suzanne Crouch have spoken out in support of expansion this year. You can read Sen. Donnelly’s statement here, and read Lieutenant Governor Crouch’s statement here. Along with a number of editorials and columns in newspapers across the state, including this recent editorial from the South Bend Tribune, the momentum is clearly on our side.
Here are 2 things you can do right now to move the pre-k issue forward:
- Please reach out to Senator Donnelly and Lieutenant Governor Crouch today to thank them for their support.
- Contact your state legislators and the Governor to let them know why you support pre-K expansion.
Together we can make a difference for the next generation of Hoosiers!
Learn more – http://www.allin4prek.com/
Autism and Health: A Special Report by Autism Speaks
Advances in understanding and treating the physical and mental health conditions that frequently accompany autism. Click here to learn more.
4th Annual Autism Resource Fair Huge Success
STORIES ON THE SPECTRUM
Autism Awareness Month is officially over, but we continue the celebration of acceptance all year long. Pathfinder is sharing stories about people from within the autism community. – “Stories on the Spectrum.”
In part five of our series, we are grateful to share a story written by Diedra Freedman, autism advocate, lawyer and mother of Andy, a teenage boy on the spectrum. Read her inspiring story about creating every possible opportunity to enable their son to use his strengths to contribute to their community.
EACS approves backpack limits: Autistic students will be assisted, officials say
Richard and Jaco: Life with Autism
“I’m being led by the hand by my child, not the other way around.” – Jaco has autism. His dad, Richard worries about how he’ll fit into the adult world. Watch the video
When I was a child, music, laughter, and a conscious focus on my abilities filled our home. The radio, always tuned to classical or popular music stations, encouraged singing, movement, and playful narration. My parents, who were quite progressive for the times, defied the conventional wisdom of the mid-1960’s; that I be institutionalized. Instead, they were determined to provide me with a foundation that emphasized music, creativity, movement, sensory integration, narration, and imitation. In today’s terms, we would call their efforts an intensive home-based early intervention program, probably most closely related to the cognitive-developmental systems approach called the Miller Method…Read more
With Star Wars receiving national attention as of late I recently stumbled upon this heartfelt story from Colin, a 7-year-old boy with autism who wants to be a Jedi Knight. He got upset though when he realized that Jedi’s are not allowed to get married. Colin at that moment decided to write a letter to Star Wars creator George Lucas asking if he would be able to change the rules for him…Read more
An autism spectrum disorder (ASD) diagnosis can be difficult news to hear. Parents of newly diagnosed children, or adults with autism, actively seek out treatment methods that relieve the anxiety and stress that can accompany autism. When anxiety and stress are relieved, daily functions improve, sometimes dramatically. One gentle and reliable method that can often provide this welcome relief for people with ASD is craniosacral therapy.
What Is Craniosacral Therapy?
Craniosacral therapy is a manual, hands-on form of therapy that promotes improved health, both physical and emotional, via gentle touch to the head, neck, and spine…Read more
It was an ordinary weekday morning in September. I was sitting at the kitchen counter working on an assignment for one of my graduate school classes when the phone rang. The caller ID told me it was someone from my son Alexander’s school, and my mind immediately began to race. Was there a problem? What could it be?
“We had an incident and need you to pick your son up from school.” These were the words I heard from Alexander’s special educator when I answered the phone. Alexander, who had just begun fourth grade, had had a meltdown at school and no one could calm him down. My heart sank…Read more
They don’t make toys like they used to. It’s not uncommon to still see the dolls and action figures of yesteryear, but as we have progressed scientifically and experienced innovative breakthroughs across technologies, toys today are more than that. They’re interactive companions, sometimes designed from a pure entertainment perspective. And, more often than not, they are keenly developed as a medium of education to foster personal development and growth.
Technology is increasingly becoming a part of nearly every facet of our lives—which means it makes sense to introduce modern tech toys and gadgets early on to children, under supervision, to build familiarity with how these devices work…Read more
As we all know, no two children diagnosed with autism spectrum disorder are alike. Experts agree, children with autism learn differently and have a wide range of developmental and educational needs. Unfortunately, teachers and support staff are often unfamiliar with the special needs of kids diagnosed with autism and struggle to teach them effectively. And, too often, administrators and teachers don’t fully understand the autism diagnosis and deem meltdowns and other communication challenges as “bad” behavior.
This typically makes it a huge challenge for families to find the “right” educational fit. All kids deserve to be surrounded by people who believe in them, understand them, and support their needs…Read more
Finding the best method for treating autism is often a challenge for the loved ones of children and adults with autism spectrum disorder (ASD). Because no two people with ASD are exactly the same, it’s vital to choose a method of treatment and therapy and an intervention plan that is tailored to address specific needs…Read more
Early Signs of Autism
Early signs of autism spectrum disorder (ASD) can be detected in infants, yet many children with autism do not receive a diagnosis until the ages of two or three. While not every autistic baby is able to be diagnosed as an infant, there are many benefits to receiving a diagnosis before reaching preschool age.
Check out our complete guide on how to recognize signs of autism in infants and children:
Autism Research Institute – September 2018 Newsletter
Autism|Eye – September 2018 News
The Arc of Indiana – Newsletter 9-23-2018
HANDS in Autism – News & Updates – September, 26th 2018
The Arc of Indiana – Newsletter 9-9-2018
HANDS in Autism – News & Updates – August, 22nd 2018
The Arc of Indiana – Newsletter 8-19-2018
Autism Research Institute – August 2018 Newsletter
ACT TODAY – Autism Care and Treatment – August 2018 Newsletter
The Arc of Indiana – Newsletter 8-12-2018
HANDS in Autism – News & Updates – August, 8th 2018
The Arc of Indiana – Newsletter 8-5-2018
The Arc of Indiana – Newsletter 7-29-2018
Autism|Eye – July/August 2018 News
HANDS in Autism – News & Updates – July, 26th 2018
Early Learning Indiana – July, 19th 2018
The Arc of Indiana – Newsletter 7-15-2018
Autism Research Institute – July 2018 Newsletter
The Arc of Indiana – Newsletter 7-8-2018
HANDS in Autism – News & Updates – July, 11th 2018
ACT TODAY – Autism Care and Treatment – July 2018 Newsletter
ASK – Answers for families of kids with special needs – June 2018 Newsletter
ACT TODAY – Autism Care and Treatment – June 2018 Newsletter
Autism|Eye – Summer 2018 News
Autism Research Institute – June 2018 Newsletter
Autism Research Institute – May 2018 Newsletter
The Arc of Indiana – Newsletter May 20th, 2018
HANDS in Autism – News & Updates – May 23rd, 2018
Autism Speaks – E-Speaks Newsletter – May 2018
The Arc of Indiana – Newsletter May 2018
ACT TODAY – Autism Care and Treatment – May 2018 Newsletter
ASK – Answers for families of kids with special needs – May 2018 Newsletter
The Arc of Indiana – Newsletter 5-6-2018
HANDS in Autism – News & Updates – April, 25th 2018
The Arc of Indiana – Newsletter 4-22-2018
HANDS in Autism – News & Updates – April 2018
The Arc of Indiana – Newsletter 4-15-2018
Family Voices Indiana – News & Updates – April 2018
HANDS in Autism – News & Updates – April, 11th 2018
Autism Research Institute – April 2018 Newsletter
The Arc of Indiana – Newsletter 4-8-2018
ASK – Answers for families of kids with special needs – April 2018 Newsletter
The Arc of Indiana – Newsletter 3-25-2018
HANDS in Autism – News & Updates – March, 28th 2018
Autism|Eye – March 2018 News
Autism Speaks – E-Speaks Newsletter – March, 2018
ASK – Answers for families of kids with special needs – March 2018 Newsletter
The Arc of Indiana – Newsletter 3-04-2018
HANDS in Autism – News & Updates – February, 28th 2018
Autism Speaks – E-Speaks Newsletter – January, 2018
HANDS in Autism – News & Updates – January, 24th 2018
HANDS in Autism – News & Updates – January 2018
ASK – Answers for families of kids with special needs – January 2018 Newsletter
HANDS in Autism – News & Updates – December 27, 2017
The Arc of Indiana – Newsletter 12-17-2017
ACT TODAY! – Autism Care and Treatment – November 2017 Newsletter
The Arc of Indiana – Newsletter 11-19-2017
HANDS in Autism – News & Updates – November 1, 2017
ASK – Answers for families of kids with special needs – November 2017 Newsletter
The Arc of Indiana – Newsletter 11-12-2017
The Arc of Indiana – Newsletter 10-29-2017
The Arc of Indiana – Newsletter 10-22-2017
HANDS in Autism – News & Updates – October 19, 2017
HANDS in Autism – News & Updates – October 4, 2017
Autism Research Institute – September 2017 Newsletter
The Arc of Indiana – Newsletter 10-8-2017
ACT TODAY – Autism Care and Treatment – October 2017 Newsletter
HANDS in Autism – News & Updates – September 26, 2017
The Arc of Indiana – Newsletter 09-10-2017
ASK – Answers for families of kids with special needs – September 2017 Newsletter
HANDS in Autism – News & Updates – September 6, 2017
WORKFORCE OF TODAY, WORKFORCE OF TOMORROW: The Business Case for High-Quality Childcare.
ASK – Answers for families of kids with special needs – August 2017 Newsletter
The Arc of Indiana – Newsletter 08-27-2017
HANDS in Autism – News & Updates -August 23, 2017
The Arc of Indiana – Newsletter 08-06-2017
ACT TODAY – Autism Care and Treatment – August 2017 Newsletter
Autism Society of Indiana – August 2017 Newsletter
Autism Speaks – E-Speaks Newsletter – July, 2017
HANDS in Autism – News & Updates – July 21, 2017
The Arc of Indiana – Newsletter 07-30-2017
The Arc of Indiana – Newsletter 07-09-2017
Autism Society of Indiana – July 2017 Newsletter
ACT TODAY – Autism Care and Treatment – July 2017 Newsletter
The Arc of Indiana – Newsletter 06-25-2017
What Autism Can Look Like in the Classroom
Why do those with autism avoid eye contact?
Why You Should Think About Transitions Differently
ASK – Answers for families of kids with special needs – June 2017 Newsletter
Autism Research Institute – June 2017 Newsletter
The Arc of Indiana – Newsletter 06-18-2017
ACT TODAY – Autism Care and Treatment – June 2017 Newsletter
Autism Society of Indiana – June 2017 Newsletter
ACT TODAY – Autism Care and Treatment – May 2017 Newsletter
HANDS in Autism – News & Updates – May 16, 2017
Noble Life – May 2017 Newsletter
Family Voices – May 2017 Newsletter
Read Diedra’s story here.
Special Education Services Just Got Easier. . . and Harder (The Endrew F. Supreme Court Decision in the Court’s Own Words)
The Endrew F. Decision Re-Defines a “Free Appropriate Public Education” (FAPE) for Students with Disabilities
Austism Society of Indiana – May 2017 Newsletter
The Arc of Indiana – Newsletter 04-30-2017
The Arc of Indiana – Newsletter 04-23-2017
Noble Life – April 2017 Newsletter
ACT TODAY – Autism Care and Treatment – April 2017 Newsletter
HANDS in Autism – News & Updates – April 14, 2017
ASK – Answers for families of kids with special needs – April 2017 Newsletter
Family Voices Indiana – Newsletter 04-13-2017
Unanimous ruling sides with argument of parents of son with autism
In unanimous decision, Supreme Court raises bar for special education (+video)
ACT TODAY – Autism Care and Treatment – April 2017 Newsletter
The Arc of Indiana – Newsletter 04-2-2017
Austism Society of Indiana – Action Alert – Vocational Rehabilitation Services Change
HANDS in Autism – News & Updates – March 29, 2017
Autism Research Institute – Clinical Research in Austism – March 31, 2017
The Arc of Indiana – Newsletter 03-26-2017
Families United for Support and Encouragement – News & Updates – March 23, 2017
HANDS in Autism – News & Updates – March 21, 2017
The Arc of Indiana – Newsletter 03-19-2017
Austism Society of Indiana – March 2017 Newsletter
ASK – Answers for families of kids with special needs – March 2017 Newsletter
Infant MRIs Show Autism Linked to Increased Cerebrospinal Fluid
Autism Risk Linked to Herpes Infection During Pregnancy
Brain Changes in Infancy May Predict Which High Risk Babies Will Develop Autism
Typical Male Brain Anatomy Associated With Higher Probability of Autism Spectrum Disorder
The Students Of Shema Kolainu School & Center for Children with Autism
Autism Research Institute – March 2017 Research News & Updates
HANDS in Autism – News & Updates – March 3, 2017
4C of Southern Indiana – News, Updates and Deadline to Apply for On My Way Pre-K is March 31
MIT Scientist Uncovers Link Between Glyphosate, GMOs And The Autism Epidemic
Monsanto Glyphosate Roundup Herbicide Triggers Autism in Children. MIT Scientist
The Arc of Indiana – Newsletter 02-5-2017
Autism Research Institute – February 2017 Research News & Updates
Clinical Research in Autism – Issues 28 – January 2017
HANDS in Autism – News & Updates – February 1, 2017
HANDS in Autism – News & Updates – January 20, 2017
ACT TODAY – Autism Care and Treatment – January 2017 Newsletter
HANDS in Autism – News & Updates – January 13, 2017
News & Updates from Autism Society of Indiana – January 17th, 2017
Autism Evansville News & Updates – January 15th, 2017
HANDS in Autism – News & Updates – January 5, 2017
FUSE (Families United for Support and Encouragement) – January 2017 Events and Updates
21 Chrome Extensions for Struggling Students and Special Needs
HANDS in Autism – News & Updates – December 21st, 2016
Man with autism uses track & field to springboard life achievements
Autism|Eye – December 2016 & January 2017 News
Autism Evansville – December Newsletter and January 2017 Events
The Arc of Indiana – Newsletter 12-18-2016
ACT TODAY – Autism Care and Treatment – December 2016 Newsletter
Aspie’s Perspective: How Understanding ASD Can Bridge “Inclusivity” and “Open-Mindedness” to Help Build Better Future For All People on the Spectrum
ASK – Answers for families of kids with special needs – December 2016 Newsletter
Indiana University – Local Community Cadre Newsletter – December 2016
The Arc of Indiana – Newsletter 12-11-2016
Autism|Eye – Winter 2016/2017 News
HANDS in Autism – News & Updates – December 7th, 2016
The Arc of Indiana – 2017 Public Policy Agenda
Business Leaders Support Pre-K Expansion – All IN 4 Pre-K
ACT TODAY – Autism Care and Treatment – November 2016 Newsletter
Autism|eye – November 2016 Newsletter
FUSE – Families United for Support and Encouragement – December 2016 Events
Hands of Autism Newsletter – November 2016
ARC of Indiana Newsletter – November 13th 2016
ARC of Indiana Newsletter – November 6th 2016
Folinic acid improves communication, eases autism symptoms in small study
ASK Newsletter – November 2016
HANDS in Autism® News & Updates – October 26, 2016
11th Annual Denim Diamonds Stars Sunday October 23rd
This is an auction benefiting those with autism that can be accessed on-line.
New study in San Diego reveals that an autism diagnosis can be guided by a brain scan.
If you need a speaker for an organization or group, contact the Speakers Bureau. Information
can be found on https://www.saind.org/speakers-bureau
NYSABA anounces 27th annual conference Albany NY
October 27th and 28th, 2016 www.nysaba.org
Hands in Autism at the IU school of medicine is taking a needs assessment
survey. They ask that you please take the time to fill this out. This can be found at
Read about the “Office of Disability Employment Policy” (US Dept of Labor)
October is National Disability Employment Awareness Month
Changes have been made to the FAFSA
3,800 more families needed for autism research
ARTICLE: Timing is Key to Understanding Sensory and Social Issues in Autism
9-14-2016 Unexpected improvement in core autism systems following a probiotich
Subscribe to the Schafer Autism Report www.sarnet.org
Special Education Law Blog
Autism Safety Coalition: Law to combat wandering
Adults with Autism Spectrum Disorders: Survey Takers Needed
Advocacy and Autism Votes – Autism Speaks
Autistic Self Advocacy Network www.autisticadvocacy.org
Autism Safety Coalition Law to Combat Wandering Deaths
American Autism Association https://www.myautism.org
Autism Science Foundation
ESSA Every Student Succeeds Act www.doe.in.gov/essa
Autism Spectrum Explained
Autism Treatment Center of America
Global Autism Project www.globalautismproject.org
Autism Source www.autismsource.org
NAC National Autism Center www.nationalautismcenter.org
Autism Action Network www.autismactionnetwork.org/?mobile=0
AOTA American Occupational Therapy Association, Inc.
I Care 4 Autism International Center for Autism Research and Education
World Autism Organization www.worldautismorganization.com
Autism International Foundation
International Society for Autism
Home and commonly-based services final rule state-wide transition plan.
“Controling Temper Tantrumums in Children with Autism” —
7-28-16 There is a new movie out about a young man with autism developing his own communication
skills. It is to be premiering August 5, 2016. Check your local theaters for LIFE ANIMATED.
New research on “The Huffington Post” http://m.huffpost.com/us/entry/10463702.html
Adults with ASD ARI E-bulletin www.autism.com/news_agi_ebulletin
IN autism and Autism Resource Network of Indiana (ARNI) have merged and formed one website.
They can be found at www.inautism.org
Schafer Autism Report www.autism.com/clinicalresearchinautism.com
“The Arc of Indiana ” newsletter can be found at www.arcind.org
Several Autism Articles can be found by typing in one of the article titles. Try
“Online Autism Training Shows Promise for Families”. This will lead you to those articles.
ALSO www.autismspeaks.org has many articles on differnt subjects.
An autism documentary is headed for the theaters. Watch for LIFE ANIMATED. Posted 6-17-16
Find an ineresting article at/on http://a.msn.com/05/en-us/AAh5Pyo?ocid=5c’
This article is entitled : EPILEPSY & AUTISM MAY SHARE COMMEN GROUND
Indiana Choice Scholarships Check the website for more information
PEDIATRICS has published a special issue on autism-related health issues. This can
be found in Pediatrics Feb 2016, Vol 137, Issue Supplement 2.
INDIANA GENERAL ASSEMBLY TO VOTE ON INDIANA’S ABLE ACT LAW
The Indiana General Assembly has introduced Senate Bill 11, which would create
ABLE accounts in Indiana. Like the federal law, Indiana’s ABLE accounts would allow people
with disabilities to save for “qualified disability expenses”, including: education, housing,
transportation, employment training and support, health, assistive technology and
personal support services, prevention and wellness, legal fees and other expenses
approved by the federal government for qualified ABLE programs.
People would be able to contribute to the accounts from pre-tax dollars, with a maximum annual
contribution of $14,000. The total account balance would be capped at $100,000, and would
not be counted in the $2,000 personal asset tests for public assistance benefits.
The Indiana senate is expected to vote on the bill this week. To read the full version of the bill,
visit http://iga.in.gov/legislative/2016/bills/senate/11 and click “latest version”. If this bill is
of interest to you, you may wish to contact your representatives in the Indiana Senate with
your opinion. You can find contact information at http://fifthfreedom.org/l/findreps.
UPDATE: As of March 21 the bill was unanimously passed and signed by Governor
Pence. Google “Gov. Pence signs ABLE ACT”.
2016 Indiana Bills
The Indiana General Assembly is in full swing and committees are working fast to get bills
heard in their house of origin. Soon these bills will be heard in their assigned committees.
These priority bills need action: SB11 SB278 HB1012 HB1219 HB1257.
Visit http://iga.in.gov/legislative/2016/bills/senate/11 and click “latest version”.
FSSA NEWS RELEASE
Family applications for August 2016 are now being accepted for ON MY WAY
PRE-K in the pilot counties.
Families residing in Allen, Jackson, Lake and Vanderburgh countnies must meet
the following eligibility criteria to apply:
The familly must have an income below127% of the poverty level.
The child must be 4 years old by August 1, 2016 and starting kindergarten by
Applications will be accepted until March 25, 2016.
Families who need help finding an approved PRE-K program can call 1-800-299-1627 for assist-
ance with an early learning referral specialist.
ON MY WAY PRE-K is the name of Indiana’s first-state-funded prekindergarten program, which
was approved as a five-county pilot by ther Indiana General Assembly in 2014. For more infor-
mation visit www.onmywayprek.org
The Indy Preschool Scholarship Program (Indy PSP) is the city of Indianapolis’s first ever
preschool program that provides free scholarships for children from low-income familiesl
The United Way of Central Indiana will provide program adminnistration support by managing
the application, outreach, and evaluation processes. Visit www.indypsp.org for more inform-
CONTACT INFORMATON: Nami Lemons Phone 317-234-5287 OR E-mail at
NINA MASON PULLIAM SCHOLARS PROGRAM
Nina Mason Pulliam Legacy Scholars Program wishes to invite qualifying individuals
to apply for their scholarship. Application and details can be found at
There are now a variety of funding options for ABA Therapy (As of March 3,
2016). Contact Michelle Trivedi, The Arc Insurance Project Manager, at
email@example.com 317-977-2375 or 800-382-9100
If you are just finding out that you have a child with special needs, you most likely want to know “what to
do next”. Their are many organizations to help direct you on the appropriate path. A few of those that
can help you get started are:
The Arc of Indiana
Family Voices Indiana
ASK (About Special Kids)
Autism Society of Indiana
IN Resource for Autism