Sexual Abuse of People with I/DD a Global Scandal

By Theresa Fears, MSW. Theresa has been working in the field of sexual abuse prevention of people with intellectual and developmental disabilities for 13 years. She created the Partnership 4 Safety program at The Arc of Spokane. The Arc has recently launched a National Center on Criminal Justice and Disability to address some of the issues highlighted by Theresa and provide resources for people with I/DD who are in contact with the criminal justice system.

rate of sexual abuse graphicSexual abuse of people with intellectual and developmental disabilities (I/DD) is a huge problem.

Children and teens with I/DD are three to four times more likely to be sexually abused than are those without disabilities. Some researchers estimate that the lifetime rate of abuse of adults with disabilities is as high as 90 percent.

Childhood sexual assault has lifelong consequences. Childhood sexual assault has been connected to depression, posttraumatic stress disorder and an increased risk of sexual abuse in adulthood.

Adult victims of sexual assault may experience the trauma of not being believed or of being blamed for the attack and risking displacement from their homes or residences. Sadly, many victims do not receive therapy to help deal with the trauma of an attack. In a recent study, only 33 percent of victims received therapy after their sexual assaults. There are many false beliefs about those who offend. The most common is that they are strangers, but according to a number of authors, between 97 percent and 99 percent of assaults were committed by someone the victim already knew. Approximately 44 percent of the perpetrators were connected because of the victim’s disability. Perpetrators may include special education teachers, bus drivers, caregivers and other support personnel.

Research on risk factors for sexual assault of people with I/DD has been consistent over the last 20 years. The frequently reported risk factors are:

  • Lack of education about sexual development  and anatomy
  • Lack of information on abuse awareness
  • Lack of healthy relationship education
  • Lack of social norm education
  • Lack of age-appropriate friends

If sexual assault is a problem, then what is the solution? Prevention! There are three levels of prevention according to the Centers for Disease Control (CDC), primary, secondary and tertiary. Primary prevention takes place before harm has occurred; its purpose is to stop sexual abuse from happening.

Secondary prevention happens immediately after abuse has occurred; its purpose is to prevent it from happening again. And lastly, tertiary prevention is a response to the harm of sexual abuse — generally therapy.

The CDC has recommendations for creating prevention programming based on years of evaluating what works and what doesn’t.

Providing prevention programming across the lifespan would require offering education to parents of people with I/DD and, children, teens and adults with I/DD.

The logical place to begin primary prevention therefore is with the caregivers of young children — the parents.

A solid parent education program should have three goals:

  • To  increase parents’ understating of  the rates of abuse and risk factors
  • To explain parental obligation to support children’s development as sexual beings and
  • To teach parents how to identify and challenge inappropriate or dangerous behaviors of any adult in a child’s life.

How can you begin a prevention program at your agency? First, look to the programs you already have for a natural fit. It would be easier to add sexual abuse prevention training to a parent education, information, support and advocacy program than it would to an employment program for example.

A good free parent education program is the “Where We Live” curriculum created by Pittsburg Action Against Rape (www.pcar.org/special-initiative). Although it is not written for children with I/DD, it can be easily modified. I would be happy to share this information with Apostrophe readers who are interested in beginning parent education in their community.

http://www.cdc.gov/traumaticbraininjury/pdf/VictimizationTBI_Fact%20Sheet4Pros-a.pdf

http://en.wikipedia.org/wiki/Sexual_abuse_of_people_with_developmental_disabilities#cite_note-5

This article first appeared in the Winter 2013 issue of Apostrophe Magazine (October-December).

Report Highlights Severe Abuse of People with Disabilities Abroad

The International Task Force of the Consortium for Citizens with Disabilities (CCD) today released a report that highlights examples of the severe abuse and neglect of individuals with disabilities around the World.  The report, Neglected and Abused Abroad: A Look at the Severe Mistreatment of Individuals with Disabilities Around the World and How the U.S. Can Help, highlights just a few examples of the horrible treatment, abuse, and discrimination faced by individuals with a variety of disabilities in other countries. 

Some examples of abuse include:

  • In Ghana, people with intellectual and mental health disabilities suffer severe abuse in psychiatric institutions and “healing centers.”  Thousands of people are forced to live in these institutions, often against their will and with little possibility of challenging their confinement;
  • In Kenya, a 10-year old girl who is deaf was raped but faces barriers in the justice system because of her disability;
  • In Mexico, children with intellectual disabilities were  abandoned at a private facility without any documentation on their diagnosis or even their names;
  • Children in Paraguay were found in cells with walls smeared with excrement and reeking of urine; and
  • In Russia, people with physical disabilities are prisoners in their own homes because of the widespread physical inaccessibility of Russian cities.

“Our country has an obligation to share our knowledge of how to ensure  children and adults with disabilities live as full citizens, with dignity and independence,” said CCD Chair, Katy Neas of Easter Seals.  “It is imperative that the United States show our leadership by ratifying the Convention on the Rights of Persons with Disabilities this fall.”

The full report is available at: http://www.c-c-d.org/fichiers/CCD_Inter_TF-Neglected_and_Abused_Abroad.pdf

The CCD International Task Force calls on the United States Senate to ratify the Convention on the Rights of Persons with Disabilities – the CRPD.  Through ratification of this important treaty, the United States will be in a much better position under international law to influence, train, assist, and if necessary use diplomatic pressure to work towards the equal rights and treatment of individuals with disabilities across the world – rights which have existed in the United States for years.

CCD is a coalition of over 100 national consumer, advocacy, provider and professional organizations working together to advocate for national public policy that ensures the self-determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society.  For years, the coalition and its members have been calling on the U.S. to ratify the CRPD protecting the rights and dignity of persons with disabilities.  CCD calls on the entire U.S. Senate to quickly provide its advice and consent to the treaty and restore the United States to a global leadership position on disability and human rights. 

How Can the Cloud Help Your Chapter?

By Mike Holihan, MediSked, Guest Blogger

As many provider agencies adopt cloud based software solutions to manage their records, let’s examine the benefits to the people who are receiving the care and service provided to them by these agencies. How does a hosted software solution (aka cloud based; meaning it is accessed through the internet) help organizations like chapters of The Arc provide the highest quality of care to the individuals we serve?  Can the cloud make the lives of people better?  We believe it can.  Below is a list of examples of how cloud based software for providers can give crucial support staff access to information instantly, wherever they are.  The cloud takes records out the filing cabinets or binders and puts them at the point of care where they belong.  Let’s look at some examples.

  • Time searching for records: With a cloud based solution, client records are centralized and new information regarding them continually gets added to the same spot.  So you always know where to look for any type of information on an individual. Think about how agencies traditionally store information today. How long would it take a provider to find out a client’s Medicaid # or emergency contact?  Sometimes access to client records is urgent and time searching for that information in a paper storage system could be crucial. Time searching for records is a big improvement when you move to the cloud.
  • Special instructions: Special instructions are a lot more valuable when they’re at your fingertips.  Whether it’s enhanced protective oversight or allergies, when a provider organization’s staff sees them right away, they can avoid negligence and improper care.  So let’s say direct care staff is on a picnic or at the park with the people they serve and someone gets stung by a bee.  The employee could pull out their smartphone and access the client record to see if they have a bee sting allergy. If they do, there could be instructions on what to do or the employee can react quicker in calling for medical care. If they see that they don’t have an allergy, they can react in a more appropriate manner. It’s all about giving staff access to information that will help them make better decisions in case of an emergency.
  • Medication administration: Rather than waiting until the end of the week to find out if a medication has been missed or administered in error, the cloud allows for real-time records. The cloud allows an agency to become more proactive instead of being reactive. This is the benefit of “real-time” records.  Real time refers the ability to see when changes are made to a record as soon as an employee makes them in the system.  Because the system is accessed through the internet or cloud, real time records give the provider, much more power in helping provide better quality of care because you can manage things that are happening as they are happening.  As opposed to be reactive and trying to correct or fix something long after the fact.
  • Improved communications: Providers can talk to each other in real-time to inform other staff of any issues or concerns, rather than allowing those issues to grow.  A good example is, change in health, behavior, demographics, or natural supports being circulated immediately. Think about how agencies traditionally work.  Departments are siloed, meaning that one department rarely talks to another department. The cloud breaks down department walls and allows better communication around what’s really important, an individual’s care.
  • Improved outcomes: When data is available immediately, it can be used for trending and making better clinical decisions.  When it exists only in a notebook, it is never charted or tracked.  A good example: seizures, weight, behaviors, falls, choking, blood glucose, and more. If ignored, these predictive variables could be missed and an individual could end up in the hospital, where they are more likely to contract other illnesses.  Again it’s about being proactive and the cloud allows that to happen!

For more information on how the cloud helps chapters of The Arc improve the quality of care, get a free e-report.

Brazilian Educators visit The Arc Baton Rouge Children’s Services

By Barry Meyer, Executive Director of The Arc Baton RougeThe Arc Baton Rouge and Brazil exchange participants

Earlier this month, we were thrilled to welcome five visiting educators from Brazil to The Arc Baton Rouge Children’s Services. The visitors came to Louisiana through a program of the U.S. Department of State. The guests joined us from five states across Brazil and included four Secretaries of their state’s Department of Education and one Deputy Secretary.

We were selected because our programs help create inclusive preschool, child care and educational opportunities for children with disabilities. One of the State Department’s specific objectives was to “Expose participants to the ways in which private sector entities are engaging with public sector partners in support of educational programs.”

Between Heidi Shapiro, Children’s Services Social Worker, two interpreters, and me, we presented four programs of The Arc Baton Rouge Children’s Services:

  • Early Childhood Inclusive Program
  • The Preschool and Child Care Training and Technical Assistance Project
  • Parent Supports and
  • School Age Supports

Using a multi-platform approach including PowerPoint presentations, multilingual handouts, informal discussion, and a Q and A session, the guests learned how The Arc Children’s Services staff works with public school administrators, principals, and teachers to help them restructure programs. Additionally, they learned how our staff serves as mentors and coaches to support teachers to include children with disabilities in regular classes. They also saw how a similar training and on-going mentor/coaching approach worked in preschool and child care settings.

In the end, the participants understood that training parents and care givers to be their child’s strongest advocate was critical to ensuring success in transitioning to public school systems. They also left with the knowledge that an organization that is not a direct stakeholder, such as The Arc, can provide that training to individual parents, combine it with mentor/coaching of  teachers and create opportunities for individual children as well as real systems change.

I feel that The Arc Baton Rouge was very fortunate to have this opportunity to demonstrate to our Brazilian guests how we at the grass roots advocacy and service level incorporate our core values in a very real world way!

The five education officials concluded their visit with a brief tour and overview of The Arc Early Head Start program. The visiting Brazilian educators were:

 

Ms. Hortencia Maria Pereira ARAUJO

Deputy State Secretary of Education, State of Sergipe

 

Ms. Maria Izolda Cela De Arruda COELHO

Secretary of Education, State of Ceará

 

Ms. Maria Nilene Badeca Da COSTA

Secretary of Education, State of Mato Grosso do Sul

 

Mr. Claudio Cavalcanti RIBEIRO

Secretary of Education, State of Pará

 

Dr. Herman Jacobus Cornelis VOORWALD

Secretary of Education, São Paulo State

Where Have You Been, Barbara Walters?

Barbara WaltersBy Mohan Mehra, Immediate Past President, The Arc of the United States Board of Directors, and Brian’s dad. Brian is a young man with Down syndrome.

Last week, Barbara Walters used her platform on “The View” to defend comedian Bill Maher when he used the “R” word to describe Sarah Palin’s five year old son, Trig, who has Down syndrome.  You can watch the clip on YouTube.

“I don’t think he intended to be mean spirited,” said Ms. Walters. Of course he did. Hiding behind jokes often becomes a form of bullying. We see it in schools, on the playing field, and in the media when celebrities who have a large platform like Mr. Maher are looking for a laugh or attention.

To excuse Maher due to possible “ignorance of the language” is unacceptable. He is a public figure, seeks the limelight in his public and private actions, and pleading ignorance does not fit his outspoken style. Where have you been, Bill Maher and Barbara Walters?

Historically, the “R” word was a clinical term used to describe people with an intellectual disability. Today, society uses it as an insult or to degrade people with intellectual disabilities. A recent survey of youth age 8-18 done by Special Olympics and the University of Massachusetts showed that 63% said that they felt bad for the person being picked on and only 9% of the youth said that they laughed or did not care. Where have you been, Barbara Walters?

In 2010, both houses of Congress unanimously passed, and the President signed Rosa’s Law, a bill that removes the “R” word from all federal health, education and labor policy and replaces it with “intellectual disability.” Nick, Rosa’s eleven year old brother said during the hearings, “What you call my sister is how you will treat her…. It invites taunting, stigma and bullying.” Words are mere vessels for meaning. Where have you been, Barbara Walters?

In our culture, the media enjoys a special status. With over 3 million viewers of “The View”, and a large following on social media, Ms. Walters has a large platform to inform and educate, in addition to entertain. It would indeed be fitting that in the memory of her sister, Jackie, who had an intellectual disability, she calls out such use of the “R’” word as hurtful and insulting to people with intellectual disabilities and their families.

Highlighting the Talent of Self-Advocates in Evansville, Indiana

By Denise Seibert, Director of Development
Evansville Arc

Last month, Evansville Arc was proud to partner with The Arts Council of Southwestern Indiana to host our first ever art show in The Arts Council’s Bower-Suhrheinrich Foundation Gallery located in downtown Evansville, Indiana.  The show opened on May 10 and runs through June 12.  The show features fabric mosaics that have been completed by individuals served by our chapter, along with volunteers and staff of Evansville Arc.

The project began in 2009 as a one-time project to engage community volunteers with the clients served in our Adult Day Services program.  However, the project was such a success that we have continued work on the mosaics thanks to the help of local vendors, such as fabric stores and interior design professionals, who generously donate wall paper samples, fabric samples, scrap materials and other items.

I believe our President,  Deidra R. Conner, described the project best when she said “This project truly demonstrates that the love of art is universal and that everyone – regardless of physical or cognitive abilities – has talents or gifts that should be shared with others.”

Description of pieces

Freedom of Religion“Freedom of Religion.”

This mosaic represents the right for all people to practice their religion or beliefs. Seclusion of individuals with disabilities in the past and societal attitudes impeded their ability to express and practice their religion or beliefs. Many individuals with intellectual and/or developmental disabilities indicate that being able to participate in worship services of their choosing greatly enhances their lives.

Beverly attended church with her sister before her sister passed away. With supports, Beverly is now able to attend religious services. ““I’m happy to go to church.  I haven’t been since my sister died.  I really miss the music & want to sing.” – Beverly W.


Freedom of Expression“Freedom of Expression.”

This mosaic represents the right to speak openly and fully without fear of undue criticism or punishment. Too often, persons with disabilities have not been given the opportunity to speak for themselves. Due to social and cultural attitudes, their opinions were not always given the same value as those without disabilities and their efforts to speak up were stifled. Individuals with disabilities have much to say and are encouraged to speak up about issues that impact their lives and their community.

“I am able to speak my mind and follow what’s in my heart”- Matt B


Right to Access“Right to Access”

This mosaic represents the right of freedom of movement in the community. Freedom of movement is two-fold: being allowed to be a part of one’s community and being able to access it. In the past, persons with intellectual and/or developmental disabilities were encouraged to be placed in institutions and hidden from the rest of society. They were not able to attend public schools and take part in the daily activities such as employment, shopping, using recreational facilities, etc.  Prior to the Americans with Disabilities Act (ADA) even if they were allowed to participate, many individuals with disabilities were limited due to physical or other barriers. Today we are seeing more and more individuals with disabilities contributing to their communities as employees, volunteers and taxpayers as they are given opportunities and reasonable accommodations.

“The best thing about getting my job is that I’m earning my own money and I now have responsibilities. Having responsibilities is the important thing, like showing up for work and being on time.” – Nathan B.

Raising Awareness of Williams Syndrome

by Mike McFall, Williams Syndrome Association

In 2010, the Williams Syndrome Association designated the 1st full week in May as “Williams Syndrome Awareness Week.”  In the years since, the number of awareness events for Williams syndrome held annually has grown tremendously, and this year, Congressman Jim Moran (D-VA) will introduce a resolution in Congress (H-Res 194) in recognition of the entire month of May as Williams syndrome Awareness month.  What do you know about Williams syndrome?

Williams syndrome is a genetic condition that is present at birth and can affect anyone.  It is characterized by medical and cognitive problems, including cardiovascular disease, developmental delays, and learning disabilities.  These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.

WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture.

Unlike disorders that can make connecting with your child difficult, children with WS tend to be social, friendly and endearing.  Parents often say the joy and perspective a child with WS brings into their lives had been unimaginable.

But there are major struggles as well.  Many babies have life-threatening cardiovascular problems. Children with WS need costly and ongoing medical care, and early interventions (such as speech, physical and occupational therapy) that may not be covered by insurance or state funding.  As they grow, they struggle with things like spatial relations, numbers, and abstract reasoning, which can make daily tasks a challenge. The majority of adults with WS need supportive housing to live to their fullest potential.  Many adults with WS contribute to their communities as volunteers or paid employees working at senior homes and libraries or as store greeters or veterinary aides, but few are able to work a “full-time” job, or earn a large enough salary to be self-sustaining.

Opportunities for social interaction are vitally important as well. As people with WS mature – beyond the structure of school and family activities – they often experience intense isolation which can lead to depression and increased anxiety.  Individuals are extremely sociable and experience the normal need to connect with others; however people with Williams syndrome often do not process nuanced social cues and this makes it difficult to form lasting relationships.

Common features of Williams syndrome include:

  • Cardiovascular Disorders
  • Kidney & Gastro-intestinal Disorders
  • Similar Facial Features
  • Developmental Delays
  • Learning Disabilities
  • Hypercalcemia (elevated blood calcium levels)
  • Anxiety
  • Low birth-weight / slow weight gain
  • Feeding problems
  • Dental abnormalities
  • Hernias
  • Hyperacusis (sensitive hearing)
  • Musculoskeletal problems

This May, thousands of children and adults are expected to join the Williams Syndrome Association (WSA) to raise awareness for Williams syndrome (WS) by holding events including nearly 50 walks in cities across the U.S. including New York, St. Louis, Detroit, San Diego and Houston. Get a complete list of events and find out more about the efforts to raise awareness at walk4williams.org. And, you can find out more about Williams syndrome at williams-syndrome.org.

My Definition of Autism

Andrew ReinhardtApril is Autism Awareness Month and The Arc and Autism NOW are taking this opportunity to ask individuals who identify as being on the autism spectrum to answer this question: “What is your definition of autism?” Andrew Reinhardt is working on a Master’s degree in physical science and has a diagnosis of Asperger’s syndrome. Below is his personal definition of autism. Follow the conversation this month online using #autismaware

By Andrew Reinhardt, Guest Blogger

Being on the autism spectrum to me was at one point in time a defining characteristic of who I am.  It is not anymore.  I’ve largely grown out of needing to define myself in such terms.  I am a very active individual, albeit not as active socially as I would like to be, but in terms of academics, work and family, I am very happy with my life and define who I am based on these parameters, and others.  This has some advantages, since I’ve seen time and again that having a disability, any disability, is not typically smiled upon in the hiring process or beyond in this country.  I’ve done best and even have tended to be hired more often when I learned to shut up and only open my mouth about having Asperger’s when it’s absolutely necessary.  Since I can pass for an individual who is not on the spectrum, at least at this point in my life, I find that it is better to not bring up such issues at all and play the part of so-called normalcy.

But still, Asperger’s still affects me in highly negative ways, though it affected me in worse ways historically.  I specifically avoid shopping at malls, or anywhere for that matter unless its grocery shopping.  I prefer to avoid eating out to ordering out.  These are habits born out of a general social anxiety, as well as several issues such as what to do with eye contact in crowds, the noise levels, the lighting, so on and so forth.  As bad as it is now, it was worse to the point of breaking out in hives during a full blown panic attack before.

This is progress, even if it doesn’t seem like it at times.  Historically, I’ve faced several problems worse than this, such as a severe fear of, and sensory problems with, insects, that caused me to run away from them to the point of running in front of cars at times.  I also was self-injurious at times when I thought I did something particularly bad, though in hindsight I’m not sure I’ve ever done anything particularly bad in my life.  All that said, though being on the spectrum has been a great bane to me throughout the years, it also has provided some good things to my life, for instance my mathematical skills, my analytical skills, and the drive to be more than I am today, the last of which is probably the most important because I’ve met individuals who have the skill, but lack the drive to do anything with it.  I contend that because of my life on the spectrum, particularly the hardships it’s caused, I’ve done better as an adult than I otherwise would have.

Running With A Purpose

Jonathan Brunot

Photo courtesy of Verlaine Brunot

This is a guest blog post from Verlaine Brunot, whose brother Jonathan will be completing the Boston Marathon this Monday in honor of Autism Awareness Month. It will be his 9th Marathon overall and his 5th time completing the Boston Marathon.

By Verlaine Brunot, Guest Blogger

My name is Verlaine Brunot and I would like to share with you all a story about the power of perseverance, dedication and willpower.  This is a story about my youngest brother Jonathan.  Jonathan is severely autistic.

Jonathan Brunot was born on March 14, 1989; a healthy child with an expressive personality.  He had lots of eye contact, and his vocabulary built steadily as he began to learn to speak.  However, when he was about 2 ½ years of age, he began to regress dramatically.  His eye contact became non-existent and the few words and even phrases he had mastered in the previous months slipped away into completely non-verbal interaction.  Jonathan would later be diagnosed as severely autistic, a prognosis that meant he could never develop “typical” brain function for his age.

Just. Like. That.

Autism is a lifelong, pervasive disorder.   However, no matter how difficult the circumstances; an autistic person is only limited by the limits we put upon them.

Case in point, our amazing mother. She always taught us that Jonathan wasn’t merely an “autistic” individual, but rather we were an “autistic” family.  It was incumbent upon us as a family to do whatever we could to help Jonathan navigate through this difficult world.

That is why throughout Jonathan’s adolescence; my mother contacted many different special needs programs to enroll Jonathan in as many extracurricular activities as possible.  Since Jonathan wasn’t capable of telling us what new things he wanted to try, we effectively had to “throw him in the deep end” so to speak and immerse him in EVERYTHING.

We signed him up for a bowling league, took him to horseback riding, as well as registered him for a special needs basketball league.  These activities gave Jonathan an outlet in order to expend all his energy as well as to help him assimilate “normal” activities like his older siblings.  Jonathan was not always enthusiastic or attentive during some of these activities; however our mother was still determined to at least give him as much exposure as possible to these different environments.  It was precisely this determination and persistence that prompted my mother to have Jonathan join a special needs running club called ROLLING THUNDER.  The selfless volunteer coaches at Rolling Thunder specialized in assisted running with the mentally disabled and they welcomed Jonathan with open arms.

When Jonathan first joined the running club, he struggled tremendously.  For the first couple of weeks, Jon could not run more then 10-15 yard without stopping, or getting distracted or wanting to lie down.  In fact, Olga began running side by side with Jonathan, at times gripping his belt and effectively pulling him along the trails.  Even after 2 months of practices, Jonathan was still not really grasping the concept of running.  Olga was nearly ready to have him quit, both as a result of her fatigue from constantly pulling him and Jonathan’s inability to connect with the sport.  The leader of Rolling Thunder, Steve Cuomo, encouraged Olga to not give up on Jonathan and worked with her to help Jonathan continue running.  That led to the fateful day when Mr. Cuomo introduced Olga to a running coach named Vincent Delcid.

Over the upcoming months, Vincent was able to teach Jonathan to pace himself, and stretch, as well as how to approach hills and to sprint at the finish line.  Over time, Jonathan developed a great “coach – athlete” relationship with Vincent during their runs and really began to embrace the sport.

After several months of running, coach Vincent  REALLY upped the ante.  He could see that Jonathan was really enjoying their runs and was getting faster and faster by the day.  Coach Vincent told us that he wanted Jonathan to run the NYC Marathon. Yes, THE NYC MARATHON.  26.2 long, difficult miles across all the boroughs of Manhattan!

To me, this seemed initially like an OUTRAGEOUS,  INSANE, EXTRAORDINARY goal to set for Jonathan; but at the very same time there was no way we could doubt the determination of coach Vincent.  Between Coach Vincent and Olga, Jonathan had a support system that could NEVER fail.

On November 2, 2008 Jonathan completed his first marathon in 4 hours and 48 grueling minutes (ING NYC Marathon 2008) and he has hit the ground running ever since!

My youngest brother Jonathan has evolved into a gifted runner and a tremendous athlete. He’s an amazingly inspiring marathon runner who shows me strength and courage everyday… and oh yea, he happens to be autistic.

The proudest older brother in the whole world,

Verlaine Brunot

You can track Jonathan’s progress via the Athlete Alert text system.
Text RUNNER to 345678
Wait for a confirmation text message.
Reply to the confirmation text message with Jon’s bib number 20973
You will be signed up.

My Brother, My Role Model

Jui and brother ChinmayBy Jui Agrawal, Guest Blogger

I am the lucky younger sister of Chinmay Khaladkar. When I think about him, I smile because of all the happy memories that he brings to mind. Whether it is his love for music, cars, travel or eggplant parmesan, he enriches my life beyond words. Having been born with Cerebral Palsy, and the complications that have accompanied his condition, he has unyielding optimism that makes me proud to be his sister.

My family has been lucky enough to travel extensively, expand our worldview and experience the cultures of many countries. However, the one journey that helped me grow the most has been at home, as I’ve watched my role model, my brother, grow and become the most loving and happiest of people.

Through Chinmay’s eyes you see a world where everyone is good and intentions are always pure. He has a way of talking to strangers, laughing at your most lame joke, and making long-lasting friendships. His celebrations always bring together his biggest fans, whether it’s his therapist of 30 years, friends from kindergarten, or family from across the country- a reminder of all the people he has touched with his love.

Over the years, as our family has celebrated Diwali, the Hindu new year, there is a ceremony when the brother gives the sister a gift as a token of appreciation. Chinmay, not having the ability to drive on his own and get me a present, has repeatedly put his paycheck in an envelope addressed to me in his scrawling letters- flooring me his gesture, and showing me the true meaning of selflessness.

Starting at a young age Chinmay has always been the one looking out for me.  Whether it was holding my scared small hand as we went into the darkened basement for a game of hide and seek, or coming to my defense when my parents were angry at me for missing curfew, he has always consoled and protected me, being a true protective older brother.

Jui Agrawal 2Despite our connection, we’ve shared the same problems that all siblings face- the squabbles, the jealousies and the competitions. Chinmay will never graduate from college or drive a car, and as I’ve hit these milestones throughout the years, he has had a hard time dealing with my moving on from our days of playing pretend. Though I have spread my proverbial wings, he feels as though I have left him behind in my journey- Chinmay, an eternal child at heart, will never fully understand that it is because of his love and support that I have learned to fly. For both of us.

As we journey through adulthood, I have become increasingly inspired by Chinmay and realized that I want to dedicate my career to the advocacy of people with intellectual and developmental disabilities. I know that without him, I would not see this extraordinary community as having the humility, grace, and determination that they embody.

Jui Agrawal is pursuing a Master in Public Policy degree at the Bloustein School for Planning and Public Policy at Rutgers University. She currently works at the John J. Heldrich Center for Workforce Development on campus assisting with research related to disability employment. Jui has spent time working in Washington, DC, both at the Pew Charitable Trusts and a boutique government relations firm focusing on environmental, tax, and health policy issues. Most recently, she has interned with The Arc of California and United Cerebral Policy, and will be joining The Arc’s national office in Washington, D.C. as the summer 2013 Paul Marchand intern.