Friday, December 27, 2013

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.

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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.

Thursday, December 19, 2013

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.

Wednesday, December 11, 2013

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.


Wednesday, December 4, 2013

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. "

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

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

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

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

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

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

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

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.
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