Centre on Human Rights for People with Disabilities - Real Life Stories

Rachael's story
‘Rachael’ is a teenager with multiple disabilities including Autistic Spectrum Disorder (ASD) and a mental health disability. When Rachael’s mental health deteriorated, she was detained under the Mental Health Order. While in hospital, Rachael experienced many problems, as staff did not understand the effects of her multiple disabilities, in particular autistic spectrum disorder and how it affected her behaviour. This caused added stress for Rachael and her family, who believed this lack of understanding was preventing her from getting the treatment she needed.

An advocate from Disability Action’s Centre on Human Rights spoke with Rachael and her family and realised that the problems went further than her treatment in the hospital. Rachael was also not getting the support she needed at school and in the community, which seemed to contribute to the deterioration of her mental health. Medical professionals from the Trust and representatives of Rachael’s school, social services and voluntary organisations, were due to meet to coordinate support for when Rachael was discharged from hospital. However, some representatives failed to show up to these meetings. Rachael’s condition became life threatening.

What human rights were violated?

Rachael’s right to the highest attainable standard of health.

Rachael’s right to education with support to maximise her academic and social development.

Rachael’s right to live independently in the community, with the support necessary to do so.

Rachael’s right to respect for home and family. Rachael and her family needed more support.

Support provided by the advocate

The advocate liaised with the hospital immediately to highlight the issues Rachael was experiencing.She explained Rachael’s multiple disabilities and the adjustments she required and eventually the hospital responded positively. The advocate contacted representatives who attended the multi-disciplinary meetings. She explained the importance of these meetings, in developing joined-up provision of support for Rachael. Where a representative failed to attend a meeting, the advocate liaised with them directly and presented proposals.

The advocate negotiated new arrangements for Rachael with social services and the Education and Library Board. A new social care package was also agreed. The advocate has also ensured that Rachael’s support package is now regularly reviewed. Rachael successfully returned to school and obtained GCSEs before progressing on to college.

To read more, please visit:  http://www.disabilityaction.org/centre-on-human-rights/advocacy/real-life-stories/ 

Centre on Human Rights for People with Disabilities - Real Life Stories

Harry's story

‘Julie,’ the mother of ‘Harry’ - a child with a learning disability, also believed Harry had Autistic Spectrum Disorder (ASD). The educational psychologist from the Health and Social Care Trust did not agree. Julie was convinced that Harry showed signs of ASD and this was affecting his performance at school, so she went privately to a doctor for a second opinion. He diagnosed ASD.

Julie subsequently sought reasonable adjustments to be made for Harry at the school. However, the Education and Library Board would not help as their policy is to only accept a diagnosis from a professional working within the Trust. As Harry did not have ASD included in his Statement of Special Educational Needs, he could not avail of the additional reasonable adjustments he required.

What human rights were violated?

As a child with a disability, Harry has the same human rights as other children. He has the right to an education and the support necessary to maximise his academic and social development.

Support provided by the advocate

The advocate contacted the Trust’s educational psychologist, the school and the Education and Library Board, which helped to secure additional reasonable adjustments for Harry at school. However, the Education and Library Board continued to discount the diagnosis of ASD and Harry found it increasingly difficult to cope at school, without the extra support he needed.

The family felt they had no other option but to educate Harry at home. The advocate supported the family to present their case for home education to the Education Welfare Service and signposted them to sources of support.

Schools Allegedly Using Emergency Rooms For Timeout

A group of parents are suing after they say their children with disabilities were repeatedly sent from school to hospital emergency rooms in response to tantrums and other behavior issues.

The parents of six New York City students are suing the city and the local Department of Education alleging that schools are calling ambulances to transport children to hospitals because they don’t have proper procedures or staff in place to address the situations.

One student referred to as J.H. in court papers, now age 6, was sent to the hospital by ambulance against his mother’s wishes on numerous occasions including one instance when school staff said he was “not listening” and “refused to sit on a rug,” according to the lawsuit filed in U.S. District Court in New York last week. The child’s mother says her son is now disinterested in going to school and afraid of police and the hospital.

Meanwhile, a now-7-year-old with autism known as D.E. was sent to the ER repeatedly as a kindergartner after having tantrums even though he was often calm before the ambulance arrived and his mother asked to take him home instead. On several occasions, the mother and son spent between four and six hours at the hospital before staff determined that the boy did not require emergency services, the lawsuit alleges.

To read more, please visit:  http://www.disabilityscoop.com/2013/12/17/schools-er-timeout/18978/

New law requires New York City cabs to be ADA accessible

Washington, DC (December 6, 2013) – Today, the New York City Taxi & Limousine Commission (TLC) announced a new requirement for 50 percent of New York City yellow cabs to be accessible by the year 2020. The American Association of People with Disabilities (AAPD), the nation’s largest disability rights organization, applauds this major milestone and congratulates the United Spinal Association for reaching this settlement.
The agreement comes as a result of a major class-action lawsuit brought by the United Spinal Association, as well as other disability groups, against the TLC. The city was charged with violating the Americans with Disabilities Act (ADA) for the lack of accessible taxicabs.
“People with disabilities need to be able to hail cabs from the street when we are running late for meetings, when we decide to see a show or when we need to rush a family member to the hospital,” said Mark Perriello, President and CEO of AAPD. “We congratulate United Spinal Association on this important victory and hope that this agreement will be a stepping stone to make 100 percent of taxicabs accessible for not only New York City but for all major metropolitan areas across the country.”
The settlement requires that half of all new medallion taxis in the city be made wheelchair accessible until 50 percent of the entire feet is accessible. The rule will go into effect before the end of the year and TLC will begin servicing the new wheelchair accessible cabs within two years. Currently, only a small fraction of over 13,000 cabs are accessible in New York City. Many other successful accessible taxi services operate in other major metropolitan areas such as Chicago, Boston, San Francisco, Miami and Las Vegas, and Portland.
Before this decision, the Metropolitan Transportation Authority (MTA) spent over 500 million dollars per year on alternative segregated transportation for people with disabilities, and the New York State Department of Social Services and the Health Department spent over 200 million dollars per year on using private emergency vehicles to take wheelchair users to the doctor. This solution will reduce costs for the city and give people with disabilities greater access to transportation at a lower cost.
Building on this important decision, AAPD calls for 100 percent of taxicabs to be wheelchair accessible. AAPD has previously called for 100 percent of taxicabs to be accessible in Washington, DC after disturbing reports showed people with disabilities being stranded from cabs.

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TN Stories of Disability: Koby (13), Autism, Henry County

"Jackie’s biggest fears concern Koby’s transition into adulthood and his inability to get off of the waiting list sometime soon. "

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• A Student interview of parent's Perspective
• Posted on 8/21/2013

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Jackie is the mother of daughter, Cowan, 14, and son, Koby, 13. Koby’s parents noticed that he was developing differently by age one. Jackie said, “I noticed that when Koby was around a year old, he wasn’t meeting developmental milestones or forming any kind of speech.” He was ultimately diagnosed with autism. Jackie and Koby’s father share joint custody of the children, so the kids spend half of their time with each of their parents. Koby’s disability allowed Jackie to start to see the world in a new way. She stated, “Koby gave me an incredible gift of how gray the world is.”

She also described several of her son’s strengths and challenges. Strengths include both his love for sports and his intelligence. He is also a positive energy in Jackie and her family’s life. His struggles include communication, as Jackie mentioned he is nonverbal. However, Jackie expressed that this weakness actually serves as a gift for others as it teaches those around him that you can actually communicate without words. When Koby attempts to speak, he communicates with intent, and people are sometimes able to understand him. Jackie offered that she is usually able to figure out what he needs because she has become accustomed to the way that he speaks. Further, Koby is able to communicate through writing. While he has a love for sports, he struggles with motor skills as he cannot throw a football.

Jackie and her children enjoy many activities. Cowan is on the volleyball team, and Koby loves therapeutic horseback riding. Jackie mentioned that she would love to be able to go to the movies but that this is not often an option because Koby is sensitive to such activities.  They spend their time enjoying the outdoors at parks, spending time with friends and family, and relaxing at home.

A typical day for Koby begins with an oatmeal bath. Here, Jackie is able to give Koby supplements through a syringe because he is still tired from the night’s sleep. The bath relaxes him, and he cannot easily run away. Jackie explained that the supplements are preventative medicines that keep him healthy. Next, she helps him get dressed, eat breakfast, and she takes him to his school for special education. After school, Jackie picks him up, gives him a snack, they pick up Cowan and either visit family or go out to dinner. Koby’s bedtime is between 9 and 9:30 P.M.

Jackie works out of town quite often and is in need of personal assistant services for Koby, as he is too old for day care. They have been on the waiting list for services for eight years, and they are hoping that one day soon these needs will be met. She also mentioned her frustrations with healthcare insurance, as she hopes one day it will cover proactive medicine. She wants to stay on top of things so that illnesses are prevented.

Jackie’s biggest fears concern Koby’s transition into adulthood and his inability to get off of the waiting list sometime soon. She is very afraid that he will not be able to get supported living in the future.  As she looks ahead, Jackie sees Koby having two roommates in a three-bedroom house. Moreover, in an ideal world, Jackie hopes that Koby has the opportunities to thrive in a residential setting, engage in activities of interest, and form relationships with peers. Also, she hopes that one day he will be able to get and maintain a job. 

- See more at: http://kc.vanderbilt.edu/kindredstories/Story.aspx?id=4098#sthash.6hzmsERz.dpuf

TN Stories of Disability: Michael (43), Other, Davidson County

"My basic hope and prayer is that I outlive my son."

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• A Student interview of parent's Perspective
• Posted on 11/03/2011

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The Family

Brenda is a real estate agent and has a 43-year-old son named Michael. Michael is both deaf and blind, has diabetes, has some developmental disabilities, and exhibits autistic and compulsive traits. He is an only child, lives at home, and is no longer eligible for the vocational rehabilitation and schooling options that the State of Tennessee has to offer.

Brenda is eager to speak with us about the challenges of having a child with disabilities in Tennessee. From housing to services and health care, according to Brenda, Tennessee has a long way to go.

Housing

Brenda would like to see Michael living in a group home, but she has not come across one that meets with her standards of quality care.  She says that if she did find one, the transition would be difficult for Michael, because he is not comfortable with change.

Services and Employment

In terms of services offered by the State of Tennessee, Brenda is frustrated that the State continually cuts funding.  She understands that the State needs help to put services in order, but finds it troubling that people with disabilities are just sitting around.  Brenda feels that the State should find some way to balance the needs of people with disabilities with the high quality of life that every human being deserves.

Education

In terms of educational services, which Michael has completed, Brenda says the State also is lacking. Michael attended a special education school, and Brenda remembers there were a lot of students all in the same place with not enough specialized care and education. While she does feel it was better than nothing, she does not feel that it was a setting conducive to learning. After that school, Michael attended a school that caters to the education of students with vision impairments.  He later attended a school that specializes in the education of people who are deaf or hard of hearing.

In Brenda’s opinion, Michael’s progress at the latter was the best of any school.  On the topic of education, Brenda says “parents, most of the time, know children better than educators do, but they don’t want to take your word for it.”

The Future

Michael is an only child, so the prospect of having a sibling take care of him is not an option.  Brenda does have a lot of family, but does not think it is appropriate or fair for them to “give up their lives and careers” to take care of Michael. “My basic hope and prayer is that I outlive my son,” Brenda tells us.

- See more at: http://kc.vanderbilt.edu/kindredstories/Story.aspx?id=3118#sthash.RwO3T4rf.dpuf

TN Stories of Disability: Eddie (74), Cerebral Palsy, Knox County

 "Eddie’s life has been full and filled with rich relationships. "

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• A Student interview of self-advocate's Perspective
• Posted on 8/21/2013

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At 74-years-old, Eddie retains a love of life and for the people around him.  He comments, “Even when I don’t feel like it, I try to stay upbeat and make it.”  His positive attitude has been honed throughout a life with cerebral palsy.  Cerebral palsy is a disorder that affects muscle tone, movement, and motor skills.  It affects coordination, making simple movements difficult.  Vital functions, such as vision, breathing, bladder and bowel control, and eating, can be affected, as well. Although there is no cure, it is one of the most common congenital disorders of childhood.  The symptoms do not worsen over time but are simply sustained over the course of one’s life.

Eddie’s life has been full and filled with rich relationships.  He grew up with two siblings, a brother and a sister, and later married a wonderful woman. Unfortunately, she has since passed away from Alzheimer’s disease, and he has been living alone for the last 12 years.  He has no desire to marry again; remarking, “When you’ve had the best, how could you ask for more?”  He graduated from the University of Tennessee with a degree in education in 1981 and proceeded to work in a computer room at a hospital in Knoxville for 15 years.   At the age of 67, Eddie decided that he had “had enough of that” and retired.  Currently, he lives in an apartment in a retirement complex in Knoxville.

Now, on a typical day Eddie prides himself in being able to wake up whenever he chooses.  Most days, he enjoys listening to music.  Eddie’s voice grew excited as he described his love for country, bluegrass, and classical music.  Church is also a large part of Eddie’s life.  He remarked that he is lucky to be part of a strong church community with friends who help him by driving him to appointments and places such as a movie theater or grocery store.  Finally, Eddie is an active volunteer and donates blood whenever he can.  He constantly looks for ways to help other people, showing his propensity for giving.

As for his mobility, Eddie chooses to use a wheelchair.  At one point, he was able to hop around on crutches but disliked this mode of transport and has used a wheelchair for the past 20 years.  In his words, the wheelchair “lets you do what you need to do.”  At one point, Eddie attempted twice to learn to drive, but his poor eyesight made it almost impossible.  For fear of accidentally hurting himself or someone else, he decided that driving was not the safest activity.

Certainly, cerebral palsy limits Eddie in a number of ways.  Eddie’s disability prevents him from always being able to spend his time in an enjoyable way.  Sometimes he needs someone to help him watch TV or engage in other activities he enjoys.  Eddie is always looking for someone who can drive him places and someone who could be his caregiver. Above all, he says that he just needs prayer so that he can continue living a healthy and long life.

- See more at: http://kc.vanderbilt.edu/kindredstories/Story.aspx?id=4102#sthash.Y6qzS4rB.dpuf

Breakthrough prompts Down syndrome soul-searching

Could it be a 'cure'? Breakthrough prompts Down syndrome soul-searching

In the 14 years since her daughter, Rachel, was born with Down syndrome, Jawanda Mast has always been clear that she’d change the condition if she could.

“I couldn’t love her more, but I would give almost anything to take away that extra chromosome,” the Olathe, Kansas, mom wrote on her blog. “While I may know she’s perfect, the world doesn’t.”

But when Massachusetts scientists announced recently that they’ve found a way to silence the chromosome that causes trisomy 21, also known as Down syndrome, it rocked Mast – and the rest of the disability community.

http://www.nbcnews.com/health/could-it-be-cure-breakthrough-prompts-down-syndrome-soul-searching-6C10879213

Motivated By Music

Since the fifth grade, Kevin Riffle has had a perpetual love for music.

A member of Medina Middle School’s band, Riffle plays percussion sometimes on the bells, snare drum or the cymbals. He will start the eighth grade next month.

“He learned to play the recorder in the fifth grade and he earned all of his belts,” said Debbie Riffle, his mother. Students earn credits, or “belts,” as they master different instruments and music in class.

Riffle said her son has Down syndrome and splits his school day in a regular education and special education class.

“Band and science are his favorites,” she said. “He loves music so much that we decorated his bedroom in a rock ‘n’ roll theme using the Beatles.”'

To read more, please visit:  http://www.jacksonsun.com/apps/pbcs.dll/article?AID=2013130715009&nclick_check=1

Woman With Down Syndrome Prevails In Guardianship Dispute

Woman With Down Syndrome Prevails In Guardianship Dispute

By Michelle Diament, Disability Scoop | August 5, 2013

In a closely-watched case centering on the rights of adults with disabilities, a Virginia woman has won the right to live with her friends rather than in a group home as her parents preferred.
Margaret “Jenny” Hatch, 29, who has Down syndrome, has been fighting for a year to live with her friends, Jim Talbert and Kelly Morris. Hatch previously lived with the couple, but more recently she has been living in a series of group homes against her wishes while under the temporary guardianship of her mother and stepfather.

You can read more here: 

http://www.disabilityscoop.com/2013/08/05/woman-prevails-guardianship/18452/

TN education chief sharpens focus on special ed

As beleaguered Tennessee Education Commissioner Kevin Huffman deflects public outcry over changes to teacher policies, he is already eyeing his next reform target: special education.

Huffman, who recently faced calls for his firing after changes to the state’s decades-old teacher pay plan, probably will face outrage again next week when revisions to the teacher licensing process are expected to be approved.

Even so, he is moving ahead with plans he hopes will make Tennessee the state with the fastest-improving schools by 2015, and special education is next on his list.

“Special education is a huge focus in Tennessee,” Huffman told The Tennessean editorial board and reporters Wednesday.

Read more at: http://www.tennessean.com/article/20130718/NEWS04/307180039/TN-education-chief-Kevin-Huffman-sharpens-focus-special-ed

Tech Giant To Recruit Workers With Autism

By MICHELLE DIAMENT

May 23, 2013Text Size  A  A

A leading software company, with offices in the United States and around the globe, is launching a strategic effort to hire people with autism in order to tap their unique talents.

The Germany-based software giant SAP said that it will recruit individuals with the developmental disorder for jobs as software testers, programmers and data quality assurance specialists.

To read the full article, please click here:  http://www.disabilityscoop.com/2013/05/23/tech-giant-recruit-autism/18012/ 

The 'Learning Curve' of Living With Asperger's

THURSDAY, April 18 (HealthDay News) -- Asperger's syndrome is disappearing as an official diagnosis, but people who live with its symptoms will continue to struggle.

"I would say that Asperger's is sort of like 'autism light,'" said Liane Holliday Willey, senior editor of the Autism Spectrum Quarterly. "Our verbal skills tend to be more developed, and we have less moments of going inward. We don't present as obvious, so we kind of fly under the radar."

"But our [lack of] ability to read your mind or read your motives is a big red flag," she said. "And that's what gets us hurt physically and emotionally and career-wise."

To read more, please visit this link:  http://healthyliving.msn.com/diseases/autism/the-learning-curve-of-living-with-aspergers 

Join The Arc Mid-South May 9th for our Summer Camp Information Session!

New "United States of Autism" movie showing at Malco Paradiso on Saturday, June 1!

Follow one man's 11,000 mile, 40 day journey across the American landscape to visit twenty families and individuals affected by autism while searching for answers for his own son. With interviews from around the nation that include the widest spectrum of backgrounds - each conducted in the participants' original language - the film weaves a broad and compelling tapestry across the spectrum of American life in all its faiths, disparities, colors, and cultures. What he learns along the way will change not only his life, but the lives of those he meets, forever. It's a story about the best days that still lie ahead for our nation, the families, and the people who give America its heart.

Please follow this link for more information.

The Arc Mid-South Executive Director Carlene Leaper featured in Grace Magazine!

Check out this article about The Arc Mid-South Executive Director Carlene Leaper that appeared in Grace Magazine!  

What's Your Definition of Autism?

What’s Your Definition of Autism?

As you may know, a new edition of the Diagnostic Statistical Manual (DSM) is coming out in May with changes to the definitions of certain disorders on the autism spectrum which is used by medical professionals, government agencies and insurers. There has been much talk about what this will mean to individuals and their families when it comes to obtaining a diagnosis and receiving services. But during Autism Awareness Month in April, The Arc and Autism NOW would like to refocus the conversation on the individuals living with autism day to day and ask: “What’s Your Definition of Autism?” What does the word “autism” really mean to you on a personal and individual level? This April, we invite you to join us in raising awareness about what autism really means. If you are not already familiar with Autism NOW, The National Autism Resource & Information Center, visit www.autismnow.org for a wealth of high-quality, reliable information designed specifically individuals on the autism spectrum or with other developmental disabilities, their families and others who care about them. Autism NOW is a project of The Arc funded in part by the Administration on Intellectual and Developmental Disabilities. And, here’s how YOU can participate in furthering the conversation during Autism Awareness Month – be sure to jump in with your thoughts and feelings on what the definition of autism is to you and share with everyone you know using the hashtag #AutismAware: Follow and comment on The Arc on Facebook and Twitter hashtag #AutismAware Follow and comment on Autism NOW on Facebook and Twitter Post this as your status on Facebook at least once during April: April is Autism Awareness Month. Help me celebrate the contributions of people on the autism spectrum by copying and posting this as your status during April. Get more information at www.autismnow.org. #AutismAware Tweet this out on Twitter at least once during April: April is Awareness Month. Foster respect, access and inclusion for all. PLS share! #AutismAware Read The Arc and Autism NOW blogs Join The Arc’s online community Sign up to receive Autism NOW’s Prism e-newsletter Join the Autism NOW forums

Disability Awareness Summit 2013

Please join the Mayor's Advisory Council for Citizens with Disabilities for its 2nd annual Disability Awareness Summit.  The summit will be held April 19th from 10 a.m. - 2 p.m. at Benjamin L. Hooks Main Library on Poplar.  To register, please visit www.brownpapertickets.com/event/326568.  Hope to see you there!

Inclusion The Default At Innovative School

By SHAUN HEASLEY

February 19, 2013Text Size  A  A

A unique New York City school is successfully serving kids with developmental disabilities alongside those who are typically developing by assuming that each child needs their own curriculum in order to thrive.

At The IDEAL School, children of varying abilities all learn the same topics, but each student does so at their own level with an individual lesson plan tailored to their needs. Specialized services like speech and physical therapy are provided during elective periods so that no student misses out on academics or feels different.

Read the whole story here: 

http://www.disabilityscoop.com/2013/02/19/inclusion-default-school/17326/ 

2013 Empowerment Doubles Tennis Tournament

Are you a seasoned tennis player?  Or someone who just loves to have fun?  Are you competitive?  If you answered yes…You don’t want to miss The Arc Mid-South’s 2013 Empowerment Doubles Tennis Tournament!  Join us on April 13^th and 14^th from 8 AM until 5 PM at the Eldon Roark-Whitehaven Tennis Center, located at 1500 Finley Road, Memphis, TN.

The cost of a team is just $50 and all proceeds go toward the programs and services at The Arc Mid-South, designed to “Empower individuals with intellectual and developmental disabilities to achieve their full potential.” 

Please click here for more information or to register.  If you have any questions, don’t hesitate to contact Dotty Carter at (901) 327-2473.

We look forward to seeing you there!  

My Voice! My choice!

My voice!  My choice!:  The Arc Mid-South’s self-advocacy group

The Arc Mid-South is pleased to announce the creation of a new self-advocacy group established to enrich the lives of people with disabilities by providing an outlet to express their ideas and concerns, develop leadership and confidence skills, and to learn basic self-advocacy skills and disability rights history.

If you consider yourself a self-advocate or are striving to improve upon your advocacy skills, please come join us! Our next meeting is scheduled for Thursday, April 25^th from 12:45 – 2:00 pm.  There is a one-time membership fee of $5.00.  If you have any questions, please contact The Arc Mid-South at (901) 327.2473.  

2013 Wheelchair Basketball Tournament

2013 Art Contest

Calling All Tennessee Artists with Disabilities!

The Tennessee Disability MegaConference is proud to announce our 2013 Art Contest!  We’re seeking artwork that shows off our conference theme this year:

Deep Roots, Broad Branches, Strong Wings

All artwork submissions will be displayed in the conference areas of the Nashville Airport Marriott hotel on May 30-May 31, 2013 during the MegaConference.

The contest winner will receive:

         

• Website recognition:  ( http://www.tndisabilitymegaconference.org )

o   Photo of the winning artwork

o   Picture of the artist

o   Bio

·         Artwork printed on program books

·         Artwork printed on conference t-shirts

·         One complimentary exhibit table in the salon area

Submission Guidelines:

Deadline:                 March 15, 2013

Theme:                   Deep Roots, Broad Branches, Strong Wings

Attach to email:        Completed entry form

High quality digital image (at least 300 dpi) of your artwork

                                      ~ DO NOT SEND ORIGINAL ARTWORK ~

Submit to:               Lori Israel at lisrael@thearctn.org

The winning artist will be notified by April 15, 2013 via email.

If you have any questions, please call Lori at 615-248-5878 or 800-835-7077 ext 22.

 

For more information or to enter the contest, please click here.

The Arc Tennessee does not discriminate based on race, color, national origin or Limited English Proficiency.  If you feel you have been discriminated against please contact Peggy Cooper, Title VI coordinator, The Arc TN, 800-835-7077 ext. 15, pcooper@thearctn.org.

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