What Should Everyone Know About Abuse?

By Nora J. Baladerian, Ph.D.

As I thought about writing this blog, I wondered, “what do I wish that everyone could know about abuse?” My first thought was I would want everyone who is a person with intellectual or developmental disabilities (I/DD) or their loved one, to know that abuse can happen to anyone… everyone. Having a disability is not a protection. Many parents and teachers have told me, “well, no one would abuse my child/the children I teach… because they have disabilities.” Their belief blinds them to the reality that abuse not only does happen to kids and adults with disabilities, but in fact it happens more to people with than without disabilities.

The most recent surveys confirm this. In February 2014, the National Crime Victim Survey noted that among those between ages 12-15, those with disabilities were victimized three times more than their non-disabled peers. The 2012 National Survey on Abuse and Disability (7,289 responses) found that 70% respondents with disabilities reported abuse in their lifetimes. And, of these, 90% said that it happened multiple times, and 46% said it happened too many times to count.

Of course it is important to study the problem of abuse to know the extent of the problem. Then it is time to take the next step:  Help the survivors, and make efforts to reduce the risk of abuse. This means, make plans to reduce the risk that abuse will happen to each child and adult with a disability. It also means to make sure that each crime victim receives the psychological support they will need. Finally, it means that the criminal justice system should be available to individuals with disabilities… which it is not now.

The 2012 National Survey showed that nearly half of crime victims did not report the abuse, and of these most did not report, believing that their report would not result in any legal action against the perpetrator. Those who reported the crimes, 54% found that their reports did not result in any legal action. This shows that the fears of those not reporting were well-founded. And, this points us in a direction for reform. What can be done to ensure equal justice is available for crime victims with disabilities?

I believe these findings give us the information needed to design a plan of action. A written  plan of action has been in place at least since 1997, when the California Think Tank on Abuse and Disability convened in Los Angeles, CA and created a plan for the state. Perhaps now, these ideas can become reality. The most essential pieces of the plan include:

  1. Give every parent/careprovider/conservator a copy of the “Ten Tips on Abuse & Disability” to learn that abuse does happen, and the steps to take if it does. If parents and careproviders do not believe it happens or can happen, they will not protect their children nor be aware of what they should do and say when abuse is revealed to them. Parents are taught many things, but this essential area is ignored. ENOUGH! Every physician, psychologist (or other mental health practitioners), disability services agency, school, etc. should make sure that parents are aware and ready to protect their child. By simply handing them the “Ten Tips,” a one page guide, the parents’ have been given their first step: awareness, information, and resources.
  2. Every agency/organization providing services to crime victims and/or people with disabilities should receive an annual one-day training on abuse issues: incidence and prevalence, perpetrator information, risk-reduction strategies and support for survivors.
  3. Every law enforcement professional (patrol, detective, investigator, captain; prosecutor, judge, etc.) should receive at least one day of training each year on the aspects of interacting with individuals with disabilities, conducting a thorough investigation, knowledge on specialized interviewing skills, and in particular familiarization with the daily life of individuals with disabilities and the programs/ individuals who serve them. Budgets for training have always been identified as a barrier, but another is the interest level and commitment of those in charge of training. We have to continue to knock at the doors of agencies, until such training is a standard part of their training package.
  4. Every medical professional working with people with disabilities (that’s all of them, I think!) and mental health professional should be required to have at least one day training on working effectively with people with disabilities, with a particular awareness of the role abuse plays in their lives. Specialized therapies for crime victims with disabilities should be a part of the training of all trauma specialists and crisis and disaster responders.
  5. Most importantly, all individuals with disabilities should be provided information about abuse, maltreatment and assault. They should be able to understand what it is. They should have a plan designed for them or with them by their parents/carers, so they know what is happening if an assault happens, what to do before, during and after. The parents and carers should also receive education, information and training on what they should do before and after their loved one experiences violence.

I believe that it is my duty, and that of others, to do what we can within our scope of work and life, to ensure the well being of individuals with disabilities. I don’t know why I believe that, exactly, but it has turned out that that is my life’s work. I do not say that should be everyone’s work!!!  But, I think that within each of our job duties, there is something we can do to be a part of the solution.

The Arc of the US, and the Disability and Abuse Project, among others, have committed to develop resources that are easily accessible.  Visiting their sites monthly would be a good idea to stay up to date on availability of resources.

References:

U. S. Department of Justice, Office of Justice Programs, Bureau of Justice Statistics, (2012)  NCJ240299 Crimes Against Persons with Disabilities,2009-2012.  Statistics Tables. Retrieved on 2/26/14 from http://www.bjs.gov/index.cfm?ty=pbdetail&iid=4884

Baladerian, N., Coleman, T., Stream, J., (2013) Abuse of People with Disabilities Victims and Their Families Speak Out:  A Report on the 2012 National Survey on Abuse of People with Disabilities, retrieved on 4/1/14 from http://www.disabilityandabuse.org/survey

Baladerian, N.,  (2014) from A Risk Reduction Workbook for Parents and Service Providers, Spectrum Institute. Retrieved on 4/4/14 from http://www.disabilityandabuse.org/resources/ten-point-guide-to-abuse-response.pdf

 

Dr. Nora Baladerian is the Director of the Disability, Abuse and Personal Rights Project in Los Angeles, CA; she has worked in the area of abuse of people with disabilities since 1972. She is a former Board Member of the National Committee to Prevent Elder Abuse and Advisory Board Member of the American Bar Association’s Council on Victims. Dr. Baladerian is a Licensed Clinical Psychologist, Licensed Marriage and Family Therapist, Certified Sex Therapist and Board Certified Crisis Responder. She is the Project Coordinator for the Disability and Abuse Project of Spectrum Institute, and from 2000-2006 the Director of the CAN Do! Project, Child Abuse & Neglect Disability Outreach at Arc Riverside.

Celebrating World Down Syndrome Day While Seeking Justice for Individuals with Down Syndrome in Today’s Society

On March 21st, 2014, the world will celebrate the ninth annual World Down Syndrome Day. While people with Down syndrome have made significant strides in education, employment, and independence, there is so much more we can do as a society to ensure people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities.

Ethan SaylorThe wrongful death of Ethan Saylor is just one example of the work left to do. Ethan, a 26-year old Frederick man who happened to have Down syndrome, died senselessly in the hands of three off-duty Frederick County Sheriff’s deputies in a movie theater in January 2013. Ethan’s death was tragic and avoidable. NDSS has advocated, alongside the Saylor family, for Governor Martin O’Malley of Maryland to ensure that law enforcement, first responders and other public officials all receive the very best training regarding interaction with people with disabilities and for the US Department of Justice (DOJ) to conduct an independent investigation into the death of Ethan Saylor. Emma Saylor started a change.org petition, which has gained over 370,000 signatures, calling for Governor O’Malley to investigate the death of her brother Ethan. In September 2013, Governor O’Malley issued an Executive Order establishing the Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities. This is Maryland’s chance to lead the way for other states on these critical issues, and ensure Ethan’s legacy lives on forever.

Just a few weeks ago in Atlanta, Georgia, Judge Christopher McFadden overturned a jury’s guilty verdicts against William Jeffrey Dumas. Dumas was convicted of repeatedly raping a young woman with Down syndrome in October 2010. According to his ruling, McFadden claims that a new trial is necessary because she did not behave like a rape victim. Even as we celebrate World Down Syndrome Day, these moments of blatant discrimination deserve our attention. NDSS condemned the judge’s actions and through an op-ed response demanded that the state of Georgia Judicial Qualifications Commission begin proceedings to remove him from office. We can all get involved by supporting a change.org petition calling for McFadden’s removal; and that justice is done with the conviction being reinstated.

Last week in Plaquemine Parish, Louisiana, a mother of a baby, Lucas, who happened to have Down syndrome, was charged with his death after poisoning him—an action that deserves condemnation and for which justice must be sought.

While we can take pause today and celebrate the achievements of people with Down syndrome all around the world, we must be reminded that for us to fully achieve our mission of equality and inclusion, we must ensure that all people with Down syndrome and other disabilities are valued, respected members of their communities. The work and partnership of The Arc’s NCCJD and NDSS is vitally important to making sure people with Down syndrome and other disabilities have the right to a meaningful life in their communities, whether it’s through a career of their choosing, a living arrangement of their liking, recreational activities of their selecting, or just friendships of their electing. We, as the national advocate for people with Down syndrome, want to be sure what happen to Ethan Saylor and other tragic, unfortunate cases never happens again.

National Down Syndrome SocietyNDSS is proud to partner with The Arc’s National Center on Criminal Justice and Disability (NCCJD), a national clearinghouse on criminal justice and disability issues funded by Bureau of Justice Assistance, U.S. Department of Justice, that provides resources, information and referral, training, technical assistance and evaluation for criminal justice and disability professionals and programs. To that end, NDSS continues to be dedicated to issues that prevent harm, abuse, and victimization of individuals with Down syndrome. Unfortunately, we learn about these tragic, unfortunate, and senseless cases involving individuals with Down syndrome every day; and we seek to advocate on the behalf of these individuals and their families as they seek justice. To that end, NDSS continues to be dedicated to issues that prevent harm, abuse, and victimization of individuals with Down syndrome.

The Best Part of Your Day

By Shanell Mouland, Blogger at GoTeamKate.com

KateIf our Kate was to sit quietly beside me on any given day you might never know she was different.  Her eyes are impossibly blue and her blonde hair is cut just above her chin with bangs framing her angelic face.  She is tall for her age; almost four.  For all intents and purposes she could, potentially, appear ‘normal’ if there is such a thing.

If you look closer you will see she that her blonde hair is wild about her head for lack of brushing, because brushing hurts and she wears a well-worn bright red Teenage Mutant Ninja Turtles t-shirt, because change is hard.  In her mouth is a chewy tube that helps her regulate a need to chew and in her tiny hand is Master Splinter, the Sensei of the aforementioned turtles.

She is likely up on her toes, bouncing or spinning.  If she is happy her arms are flapping. She is usually happy. The idea of her sitting quietly is almost humorous to us now.

She may be repeating a comforting phrase.  She has acquired much language even if she cannot always use it properly.

“Wet’s do dis.” (Let’s do this) A phrase she’s pulled from her turtle show, no doubt.

Kate has autism and she’ll be the best part of your day.

Grace, our eldest daughter (5) and Kate’s best friend will often have one hand at the ready, for when Kate sees fit to take off.  She is young and quick and can often capture her sister before me.  You’ll see this scenario play out whenever we are in public.  I’ve often said the four words Grace utters most in public are:  “Mama, she’s getting away!”

My husband and I make every effort to do things as a family.  If we feel Kate will be overwhelmed we obviously give her a pass and she can spend some down time with her grandparents, however, if we feel Kate will enjoy any given excursion, look out, because she is coming.

Our family loves a certain Japanese restaurant in our city.  Do I call ahead and warn them we are coming? No.  Do I announce on social media that we will be there in case someone was planning a quiet dinner?  No.  We attend the restaurant with our family just like you would.

Yes, Kate will most likely not sit in her seat.  She will probably visit most tables in the restaurant anxious to show off her turtle figure.  She will explore the textures of the seats and the tablecloths and the curtains.  She will protest loudly when she is not allowed in the kitchen.  She will make sure each patron eating dinner that evening is fully aware of her presence.  She will call the women, Mama and the men, Daddy and she will hug more than a few.

In our experience, most people will smile broadly and engage our little social butterfly.  Some will shoot us that ‘how dare you bring a child to a restaurant like this’ look and some will stare at us with pity.

As we enjoy our Sushi and Tempura and some great conversation with the folks at table five about autism and our family, the woman at table nine purses her lips and sips her wine annoyed that mid-miso soup she was privy to Kate yelling to the chef clear from our table:  “Dat your hat, daddy?  I have dat hat?”  Her husband seems oblivious to her annoyance and taps on his phone while murdering his teriyaki.

Table five dissolves into laughter at Kate’s cute request for the chef’s hat.  They order more wine and ask Kate which turtle is her favorite.

Table nine gets up and leaves.  They pay their check with a disapproving glance from the Mrs. towards us.

Honestly, who brings someone like that woman out to a public restaurant where a family is trying to enjoy a meal, anyway?

And then I hear:  “Mama, she’s getting away!”

 

Shanell Mouland is a mother, teacher and writer from New Brunswick, Canada. When she isn’t advocating for the rights of individuals with autism she is writing a children’s book called: Sunny and Sinclair. She is actively seeking a publisher because the three full time jobs mentioned earlier take a lot of time away from important things like coffee drinking and relaxing. She can be reached through her website: goteamkate.com.


Learn more about The Arc’s activities for Developmental Disabilities Awareness Month at www.thearc.org/lets-go-out, and join our March 29 event on Facebook.

It Takes a Team

By Bernard A. Krooks, Past President, Special Needs Alliance

Dignity, security and personal fulfillment are essential to the quality of life that all individuals with intellectual and developmental disabilities deserve. But they face a tangled social, political and legal landscape, and it often requires the coordinated efforts of relatives, friends and special needs professionals to help them map their way.

Family members, of course, play a central role, offering emotional support and encouragement, planning for long-term financial security and frequently acting as primary caregivers. For some, they’re an individual’s most effective advocates, reinforcing their point of view with intimate understanding of a loved one’s needs.

Yet all too often, dreams face constraints.  Landmark legislation has recognized the civil rights of individuals with disabilities, and great strides have been made regarding social inclusion. But these hard-won victories are incomplete, and budget debates at all levels of government threaten even the programs already in place. Self-advocates, families and their supporters –advocacy organizations such as The Arc, the Consortium for Citizens with Disabilities, the Special Needs Alliance and many others–must continue their unstinting demand that people with disabilities have the same opportunities as others to lead self-directed, satisfying lives.

Then there are the special ed teachers, speech therapists, psychologists, career counselors and many other service providers who assist those with disabilities on a daily basis to realize their potential. These committed professionals challenge, guide and applaud those they serve in order to build the skills needed for self-reliance. They help provide a foundation for the aspirations of individuals and their families.

As a child with disabilities matures, families must often balance concern for their safety and well-being with a desire to encourage their independence. In most states, individuals are considered legal adults at 18, with full responsibility for their own financial, legal and healthcare choices. Special needs attorneys are sensitive to these deeply personal matters and can guide parents in their deliberations concerning various forms of guardianship, power of attorney and health care proxy, as necessary, and in ways to optimize self-direction.

Then there are financial considerations. The specialized care required by some individuals with developmental disabilities is costly. While many expenses are covered by public programs, there are gaps, and qualifying is usually means-based.  Families, financial advisors and special needs attorneys should begin partnering early to evaluate an individual’s long-term needs, eligibility for benefits, the amount of money necessary to make up the difference between what is covered and what is not, and how to protect those funds while receiving government assistance.

Self-advocates are increasingly shaping their own destinies. It takes a team to assist them with the tools to succeed.

The Special Needs Alliance (SNA), a national non-profit comprised of attorneys who assist individuals with special needs, their families and the professionals who serve them, has formed a strategic partnership with The Arc.  The relationship is intended to facilitate collaboration at the local, state and national level on issues such as providing educational resources to families, building public awareness, and advocating for legislative and regulatory change. 

Reflecting on Wings for Autism

By Sylvia Fuerstenberg, Executive Director of The Arc of King County.

Wings for Autism event registration

Wings for Autism took flight at SeaTac Airport, and it was a great success. I am so grateful for all of the families who took part in our launch, as well as the many volunteers who made the event a success. The commitment of The Port of Seattle and Alaska Airline is phenomenal. They are single minded in making travel inclusive for everyone. The TSA even made going through security a positive experience. When that is true, you know that everyone was committed! Although I could say a lot more about the event, I would rather let some of the parents and event partners tell you about their experience.

From Lisa Okada Visitacion, Mom:

“Phenomenal event. Increasing awareness and understanding. Building confidence and skills. Giving families hope. These are just a few thoughts I had about the Wings for Autism event yesterday. Kelli (and all the other participants) did such an amazing job. Many, many thanks to all the volunteers (there were many!) and staff at The Arc of King County, Alaska Airlines, TSA and the Port of Seattle. We will remember this experience forever and will most likely be flying Alaska Airlines when we travel by air. (I wonder if we can we take along a few of the volunteers, too?!?!)”

Wings for Autism pilot & child

From Jacki Jones Chase, Mom:

 “We got in the plane and they taxied it all over the airport runways. Then they stopped and let the kids, and adults, go check out the cockpit and bathrooms – they really put on an awesome event for kids with Autism!”

Wings for Autism pilots

From Jennifer Wade, Mom:

 “From the moment my family arrived at the airport, there was a friendly, smiling person with a Wings of Autism T-shirt on, guiding us along our way.   Every step of the process we were assured, explained the process and every attempt was made to ensure we were comfortable,  our questions answered and made to feel at ease in what is potentially a stressful situation for any parent /caregiver, taking a child on a flight. A special thanks to our pilot Mark who walked thru the entire waiting area talking to each family, meeting the kids, shaking hands and relaying his own personal story and why the event was so important to him. Having a child with special needs I’ve learned that it’s the support of family, friends, specialist and complete strangers willing to share their own insight and compassion that keeps our momentum going onwards on the path of progress and potential.”

Wings for Autism participant

Ray Prentice, Partner at Alaska Airlines:

“I didn’t realize until this event that a little bit of additional training and guidance, combined with our great caring employees, could totally change people’s lives. Speaking on behalf of Alaska Airlines’ volunteers I can openly share that we had a blast.  We felt a close connection with everyone at the event.”

Wings for Autism participants 2

From Sue Hanson Smith, Partner at The Port of Seattle who traveled to Boston to learn about the event and inspired us to bring it to Seattle:

“Thank you for all for pulling off a spectacular, in some cases, a life-changing event. I am so proud to be part of such a well-organized, energetic, and fun-loving team of professionals! The Arc of King County rocks! Without you we would not have had the families and the special kids to learn from.

Without Alaska Airlines we wouldn’t have been able to provide the “life-changing” experience. Thank you so much for your flexibility and your generosity in providing the airplane experience and memories to these selected families and their children. The t-shirts were the best!

And…TSA was outstanding in their ability to provide an easy, pleasant experience to the families and their children. From all the comments I heard, the first Wings for Autism at Seattle-Tacoma International Airport was a great success and it’s because of all of you.”

Wings for Autism participants

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.