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| BRYAN TUCK/Advocate |
Fourteen years ago, 13-year-old Daniel Lewis enrolled as a boarding student at the Louisiana School for the Deaf, a place that was supposed to give him the skills to engage with the world.
That August, Daniel — with bright blue eyes and blond hair, but borderline mentally retarded and smaller than his peers — moved into a room in the middle school dorm on the school's Baton Rouge campus with three other boys.
During Daniel's second week at the school, one of his roommates, a larger 13-year-old of normal intelligence, began crawling into his bed at night to rape him, Daniel recounted recently.
Susan Lewis, Daniel's mother, pulled him from the school after only three weeks, when Daniel, despite not completely understanding what had happened, managed to tell her.
"I came home and told my mom what happened, all of it," Daniel said.
Daniel's rape was one of several at the school in the early 1990s, court records show. A four-part WBRZ series in 1999 uncovered "numerous and unabated" sexual incidents among students at the school, including rapes and molestations, many of which were not reported to police.
That series prompted state officials to form a task force to investigate those allegations and make recommendations for changes.
But a spate of recent incidents suggests that problems with sexual misconduct persist at the school.
A five-month Advocate investigation has revealed that in the past five years, seven adults — three teachers, a dorm worker, a counselor, a Sunday school teacher and a former student — have been accused of improper sexual behavior with four girls at the school.
Additionally, hundreds of pages of police and school incident reports show at least 32 incidents of sexual misconduct among students in the past five years, ranging from rape to sexual battery to inappropriate touching.
"That's unreal, why hasn't it stopped? Why hasn't anybody in an administrative position stopped this?" Susan Lewis asked after hearing about the recent incidents.
School and state education officials maintain that they have adequately addressed the problem by reporting incidents to authorities, holding workshops with students and meeting with parents.
In a recent interview, state Superintendent of Education Paul Pastorek stressed that the five arrests of school employees were for alleged crimes that did not involve actual "skin-on-skin" sexual contact with students. Investigators have said that there was no skin-on-skin contact in the other two arrests either.
"I've been told by the experts that we brought in that the amount of activity we have going on is lower than normal as compared to (other) residential deaf education settings," Pastorek said. "Having said that, is it good to have these kinds of actions? No, it's not good. Is it acceptable? No, it's not acceptable. Is it something we should try to reduce? Yes."
Several outside experts maintain that deaf schools are an essential place for developing deaf culture and should be safe havens for students. No level of sexual misconduct is acceptable, they say.
A series of arrests
The 156-year-old state-run Louisiana School for the Deaf — with an annual budget of more than $20 million — is situated on 116 grassy acres on Brightside Lane in Baton Rouge and serves 225 students ages 3 to 21.
With the student body drawn from across the state, 146 live in the school's six dormitories during the week. They are bused home on Friday evenings and return to the school on Sundays, interim director Kenneth David said.
Aside from being deaf, 28 percent of the school's students have an additional disability, such as autism, below-normal mental capabilities or blindness, said Virginia Beridon, interim director of the state's Special School District, which also oversees the state blind and special education schools.
The school employs 55 teachers, 23 teacher's aides and 50 dorm workers, Beridon said.
While in the 1990s the school's problems seemed to be limited to inappropriate sexual behavior among students, the problem today includes teachers and staff accused of being offenders.
The seven adults arrested from May 2003 to April 2008 are all deaf and were either school employees or members of the state's tight-knit deaf community.
Four of the employees — Ray Freeman, Nathan Boyes, Christopher Watson and Amanda Key — were accused of sending a mix of explicit e-mails, text messages and photographs to teenage students.
A fifth employee, Charles Hodges, was convicted of molesting a 15-year-old girl. Prosecutors claim he forced her to touch him over his clothes when he was chaperoning a school trip to Florida.
A sixth arrest occurred when Brandon Veronie, a former student, sent explicit text messages to a 16-year-old girl. His plans to have sex with her in a field were thwarted when the student's mother found the e-mails, police said.
Joey Thomas, a Sunday school teacher at the Liberty Deaf Assembly of God Church and former student, was arrested most recently. He was accused of sending explicit text messages and e-mails to a 14-year-old girl he considered his girlfriend.
Other inappropriate sexual behavior from teachers, while not criminal, has also occurred in the past five years.
Kristin Post Thibodeaux was allowed to resign in 2004 after an internal school investigation found she had conducted a series of inappropriate activities with her fourth-grade students. She taught them about oral and vaginal sex, put a thong on a boy's head and stuck sanitary napkins on another student's back, documents provided by the school say.
Melissa Stevens, one of the parents who sparked the investigation of Thibodeaux, said she was troubled by the way the school handled the situation.
"Allowing her to resign instead of being disciplined by termination, I don't think that was appropriate," Stevens said.
Adults were not the only people accused of sexual misconduct with deaf school students.
Under the state's public records laws, The Advocate obtained internal school incident reports for 32 cases of student-on-student sexual acts that school administrators have handled since January 2003.
Of those, five were classified by the school as "Class A" offenses, defined as rape, sexual battery or a "repeated Class B offense."
For a Class A offense, students receive from three to five days suspension or assignment to the After School Behavioral Center. Incidents are referred to police and the Office of Community Services when appropriate, school officials have said.
Freeman, the staff member arrested and convicted in 2005 on charges of obscenity, worked in the After School Behavior Center, counseling students when their behavior was inappropriate for the classroom.
The remaining reports were for "Class B" sexual misconduct, defined in the student handbook as "having sex or being involved in sexual activity (molestation) on-campus or off-campus during any school-sponsored activity." For a first-time Class B offense, students receive one to three days suspension and assignment to the After School Behavioral Center.
In response to The Advocate's public records request about student-on-student sexual acts, the deaf school provided incident reports that were almost completely blacked out. Those deletions made it nearly impossible to get a clear sense of what happened and the age or sex of the students involved.
Additionally, school officials and lawyers for the Department of Education repeatedly refused to provide the dates of offenses. They said providing that information would identify individual students.
Responding to a July letter asking for the dates of offenses, Pastorek offered in late September to provide them in exchange for blacking out more information. The Advocate declined.
While the documents provided by the school do not provide a clear description of the offenses in question, some contain narratives of meetings among students, staff and parents over allegations of sexual misconduct.
The following are excerpts from the reports provided by the deaf school, and two recent responses from David, the interim school director.
David asked a victim if maybe he or she "did not really want sex but just accepted it and was not forced." The victim replied that the sex was forced.
When asked about this, David said the context could not be provided because it would reveal personal identifying information about the students involved.
David stated that he might make a scarlet letter to put on the shirt of a student so that everyone would know the student was sexually active and must be closely watched.
Asked about tshe comment, David said: "Because our students are language-delayed and language-disordered, in order to get them to understand the seriousness of a situation that they were involved in we have to come up with some situations to help them understand how serious it would be. We have to make it very concrete because of the language barrier there."
The mother of a student "stated she was angry with the school because this was the fourth incident that had occurred where she had not been notified."
Police reports obtained from the same five-year period provide much more information. But because the dates are not included on the school's reports, it is impossible to match up the two sets of documents.
The police reports show that:
- In March 2004, a 14-year-old boarding student at the school reported to police that someone came into her dorm room while she was sleeping and fondled her. No arrest was made because she could not identify the attacker.
- In November 2005, a 14-year-old boy told his mother he did not want to go back to the school because he had been raped by a 15-year-old boy in a dorm room. A juvenile sex crimes detective investigated, but there was not enough evidence to arrest the 15-year-old, a police report says.
- In February 2006, a 16-year-old girl reported that she was sexually assaulted by a 17-year-old boy. He pushed his hand inside her underwear after grabbing her in a recreation room at the school. The victim decided not to pursue charges after her assailant withdrew from the school.
The school responds
In the late 1980s and early '90s, stories of student-on-student rapes at the school made headlines, prompting lawsuits and the arrests of at least two students.
A four-part series that aired on WBRZ-TV prompted then-state Superintendent of Education Cecil Picard to convene a 12-member task force of social workers, outside educators and parents to investigate incidents at the school.
In a 2000 report, the task force faulted then-school superintendent Luther Prickett for his "top-down" management style.
The report concluded that the sexual misconduct they found was not unique to the Louisiana School for the Deaf. Those problems "are seen in any comparable institutional setting, in public and private schools and life in general," the report says.
Prickett retired in 2005. Longtime employee David, then dean of students, took over as interim director of the school.
This year, after the arrest of Joey Thomas in April, Pastorek announced that he was bringing in another set of experts to evaluate the school's response to the problems.
Pastorek hired Dr. Alan Cohen a psychiatrist at the National Deaf Academy and Reginald Redding of the Eastern North Carolina School for the Deaf. Cohen was paid $9,688; Redding $3,000, Beridon said.
Beyond hiring consultants, Pastorek also met with parents in May to discuss the arrests.
Beridon said the consultants spent three days at the school in June. They reviewed documents and met with staff and four parents at a time when the majority of the student body was home on summer vacation.
Pastorek said he has met twice with both experts and has been encouraged by their evaluation of the school. They will issue a report in October.
"I feel confident that what we're doing at the school is the right thing and that we're taking reasonable steps to ensure the safety of the children," Pastorek said.
During the hiring process, the school performs background checks of potential employees. Also, once hired, employees are required to sign a form in which they agree that only designated sex education teachers can discuss sex with students.
Pastorek also said the school reports incidents to authorities as they arise.
Letters David sent to parents indicate he has been more proactive than Prickett in communicating with parents.
David sent parents multiple letters about the five arrests that occurred during the 2007-08 school year. In a letter sent to parents in April, David wrote that incidents leading to the arrests did not happen on school hours or on school property and stressed that inappropriate correspondence could be found at any school.
"I would also like to suggest that if someone were able to procure transcripts of all cell phone communications of students at any school &hellip that such transcripts would reveal totally shocking information. Inappropriate use of electronic communications and/or the Internet is not unique to LSD — it is occurring everywhere," David wrote. "However, we need to be ever-vigilant in protecting our students."
Kaedra Arnold, the grandmother and legal guardian of a 13-year-old fifth-grader at the school, said her grandson has benefited from the school's education and has not been involved in any of the sexual misconduct cases.
However, she urged the school to be vigilant and not accept any level of sexual misconduct within its walls.
"The standards ought to be set so high so that you have something to aim for," Arnold said. "We need to make sure that we're not measuring ourselves against other people and against other establishments."
‘Easier targets'
Frederic G. Reamer, a professor of social work at Rhode Island College who has spent years working with offenders who prey on the disabled, said deaf children and adolescents are especially vulnerable to abuse.
Reamer said some sexual predators even seek out children and teenagers with disabilities because they are "relatively speaking, easier targets, easier marks."
Deaf children with multiple handicaps are "especially vulnerable because they may not have the wherewithal that other kids would have to resist the adult's sexual advances and they may find it difficult to speak up about them," Reamer said. "They may find it extremely difficult to assert themselves and disclose to other people in authority what is going on."
Reamer was quick to add that he has encountered sexual misconduct in other institutional settings involving the disabled.
"I think it cuts across a number of different disabled populations, and this is an especially vulnerable population because they're kids," Reamer said.
Deaf children at residential schools are often far away from their parents and tend to rely on teachers and staff for encouragement and support more than other children would.
Sexual scandals occur at deaf schools around the country. In May, a dorm supervisor at the Texas School for the Deaf in Austin was arrested after confessing to fondling a boy in his care.
"The stories are heartbreaking and the kids are very vulnerable for a lot of reasons," said Donna Mertens, a professor of education at Gallaudet University and author of a 1996 study on sexual abuse at deaf schools.
In her study, Mertens spent two weeks evaluating the situation at a state-run deaf school that had seen a number of arrests and convictions.
"So many people told me ‘that's the way it's always been, that always happens to deaf kids,' and they're not surprised by it," Mertens said. "There's just no excuse for denial. &hellip The basic principle that needs to guide your actions is the safety of the children."
Mertens stressed that deaf schools play a crucial role in providing a place for deaf children to feel normal and be around others who share their language and culture.
Lawrence Siegel, a special-education attorney based in Fairfax, Calif., and the founder of the National Deaf Education Project, agreed that deaf schools are important places for deaf children to form peer relationships.
A deaf child attending mainstream public school might be the only deaf child there, he said.
"The school where a 12-year-old deaf kid can have a 12-year-old deaf peer is truly the least-restrictive environment," he said.
Deaf schools provide a place where deaf children can communicate with each other in American Sign Language, their first language, and not feel as isolated, Siegel said.
"The value of these kind of language-rich environments is really staggering, Siegel said.
Daniel Lewis, the 13-year-old boy who was raped at the deaf school in 1994, never benefited from immersion in the language-rich environment. Instead, he went home.
A lawsuit over the rape was settled out of court. His mother declined to discuss it because of a confidentiality agreement.
With the help of a therapist, Daniel slowly recovered from the trauma of the rape. But his quality of life has been profoundly impoverished by the incident, his mother said. Daniel has no deaf friends and never learned sign language.
Today, Daniel is a soft-spoken 27-year-old who lives an isolated life with his mother and his dog, Daisy Mae, and several cats in a town of 1,300 in Acadia Parish.
"He did belong there—he was part of the deaf community. And now he's not at all," Lewis said.
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Reprinted with permission of The Advocate.
Tags: Deaf School Abuse, deaf school sexual abuse, deaf sexual abuse, Frederic G. Reamer, Frederic Reamer
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There are an estimated 11,000 new cases of spinal cord injury (SCI) in the United States per year. Over the last several years, SCI has primarily affected persons aged 16 – 30, 78 percent of whom are males; and predominately Caucasian (78 percent).
Almost half of the spinal injuries occur as a result of motor vehicle injury, second are falls, and the remainder come from acts of violence such as gun shot wounds or knife injuries as well as war related injury.
SCI is defined as, damage or trauma to the spinal cord that results in loss of sensory and motor function. An SCI can result in either a "complete injury" (a loss of all voluntary movement) or an "incomplete injury" (a partial loss of voluntary movement).
An SCI is classified utilizing a scale developed by the American Spinal Injury Association (ASIA) that uses a system to describe the level of injury. For example, a person with an ASIA A complete injury describes a person who has no voluntary movement or sensation below the level of injury.
Spinal cord injury (SCI) is a devastating event that not only has physical but social and psychological ramifications for both the individual and the family. In one moment, a person's world is monumentally changed forever with reverberations throughout the whole family system. The person who sustains an SCI is at high risk for many factors including: dependency, depression, drug addiction and, if married, divorce. They can also struggle with debilitating secondary medical complications and other factors such as the effects of perceived social discrimination, declining help and lack of social, family, and emotional support.
When something traumatic happens to one family member, the whole family feels the effects. Roles and responsibilities change. Marital strain occurs when one partner has to take on unfamiliar roles such as providing assistance with activities of daily living, financial responsibility and intimacy changes. This can put the person without the disability at high risk for depression.
Parents who have a young adult child that has an SCI will often reestablish the role or responsibility of parenting. If the person has left home, this may mean moving back in. This can affect self-esteem of the person with SCI and cause conflict with parents.
Interpersonal relationships are affected as well. Friends who may have had previous interests or activities they enjoyed doing together are now different. The person with SCI may withdraw or may feel embarrassed being seen post-injury. While having a young child sustain a spinal cord injury, brings a new dynamic to the entire family system and numerous challenges to the child who must face an SCI during times of dynamic growth and development.
When a person, and by association, a family, experiences a traumatic event, they will experience a series of emotions or phases. These phases are used as a guideline to understanding this overwhelming emotional process. It is important to note that the person with SCI may be in one phase and the family in a different phase during the same period of time. It is critical to keep lines of communication open and to allow everyone to experience this process at their own pace.
Initial phase
The first stage is a general sense of denial or disbelief stage. This process is a built-in defense mechanism to help us cope with extremely stressful situations. It is a normal process and is usually helped by getting more information. This first step on the road to adjustment is characterized by absorbing information, learning new tasks for care, and understanding what is lost and what is left.
Middle phase
The next phase is usually characterized by more emotional responses such as guilt, anger, and depression. Someone may experience feelings of anger or may displace the anger they feel about the injury onto someone else. A person with an injury may feel guilty, especially if careless or reckless behavior was the cause of the injury. They may also now perceive themselves as a burden to the family. Depression is associated with the losses endured by everyone going through this experience. Whatever the emotion, a person with a SCI or family member should be supported and validated. If symptoms become severe, professional counseling is appropriate and recommended.
Adjustment Phase
This phase can be short or last a lifetime. Generally, during this phase the injured person becomes more familiar with living with an SCI. They may gain independence at a wheelchair level with regard to self-care or may adjust to having a caregiver. During this phase, one generally returns to activities they were doing before an injury such as: socializing, driving, employment/volunteering, and adaptive recreation.
Research has shown that social support is related to a positive outcome following an injury or illness. Support systems are very important in helping a person to adapt, adjust, and cope with an SCI. Support can come from a variety of areas. During the initial phase the primary support from friends and family help with providing encouragement and hope. Secondary support systems consist of health care professionals, i.e. doctors, nurses, physical and occupational therapists, and social workers who provide instruction, training and a safe environment for adjustment. Spiritual support can also be a source of comfort and peace for the person with an SCI and the family.
Apprehension about sexual functioning and reproduction is common after an SCI. Education and counseling are very important in understanding an adaptive response to sexual functioning. Sperm harvesting, artificial insemination, and in-vitro fertilization have offered couples hope in achieving pregnancy. SCI does not have to be the end of having sexual relations or conceiving a child.
Intervention during the initial crisis
- Provide short term or crisis intervention at the beginning of the process.
- Act as a liaison between the medical team and the family providing valuable information to both sides.
- Address immediate questions and concerns and provide updates on the person's status.
- Help reduce anxiety by providing information and allowing the family to vent feelings and concerns.
- Provide empathy, listen, and normalize feelings.
Longer-term interventions for the person with SCI
- Provide counseling to help increase self-esteem, self-worth, and self-efficacy that build a sense of empowerment for the person to resume decision-making and control of their life.
- Provide cognitive behavioral therapy that can help a person restructure their thoughts and behaviors in order to cope more effectively and live a more satisfactory life.
Assisting the family and person with SCI
- Social workers can identify resources and referrals to agencies that can help with a variety of concerns i.e. making adaptations to a home, financial assistance, vocational rehab, transportation, and support programs.
- Provide continual counseling throughout the process of adjustment to address anxiety, re-entry into social/work environments, and relationship/caregiver issues.
- Advocate for legislation to assist in providing more services for this population.
The following are various sites that provide information and resources for the individual with SCI and his/her family.
The following is a list of journals in which articles relevant to SCI can be found:
- Archives of Physical Medicine and Rehabilitation
The Archives of Physical Medicine and Rehabilitation is the official journal of the American Congress of Rehabilitation Medicine
http://www2.us.elsevierhealth.com/inst/serve?db=home&id=apmr
- Critical Reviews in Physical and Rehabilitation Medicine
Critical Reviews in Physical and Rehabilitation Medicine is devoted to healing technologies other than those based on altering body chemistry (drugs) or integrity (surgery). The journal provides reviews of well-established diagnostic methods, clinical modalities, and techniques, and physical and rehabilitative methodologies for specific etiologies amenable to treatment by physical medicine. The journal appears quarterly, and includes from one to four articles that summarize and evaluate the current status of an important topic. Topics and authors are chosen by members of our distinguished Editorial Board, all of whom are leading practitioners, researchers, and active contributors to the literature in their area of expertise. The focus of the journal is directed at making available assessments of subjects that comprise the advancing frontiers of the field. http://www.begellhouse.com/journals/757fcb0219d89390.html
- Disability and Rehabilitation
Disability and Rehabilitation is the official journal of the International Society of Physical and Rehabilitation Medicine (ISPRM). It is an international, multidisciplinary journal which seeks to encourage a better understanding of all aspects of disability, and to promote the rehabilitation process. The journal publishes articles on rehabilitation in practice and rehabilitation engineering, spanning a range of issues including the severity and magnitude of disability, clinical medicine including gerontology, psychosocial adjustment, social policy issues, vocational and educational training, and rehabilitation engineering.
http://www.tandf.co.uk/journals/authors/tidsauth.asp
- Disability & Society
Disability & Society is an international journal providing a focus for debate about such issues as human rights, discrimination, definitions, policy and practices. It appears against a background of change in the ways in which disability is viewed and responded to.
http://www.tandf.co.uk/journals/journal.asp?issn=0968-7599&linktype=1
- International Journal of Rehabilitation
International Journal of Therapy and Rehabilitation (IJTR) is the leading interdisciplinary review journal for physiotherapists, occupational therapists, speech and language therapists and all other allied health professionals working in therapy and rehabilitation.
http://www.ijtr.co.uk/
- Journal of Spinal Cord Medicine
The journal is the official publication of the American Paraplegia Society (APS). It boasts a distinguished history whose contributors include worldwide leaders in the field of spinal cord medicine. The science of spinal cord medicine is advanced through coverage of basic science, translational research, clinical studies and expert commentary. The journal invites contributions representing original research, reviews, clinical notes, case reports, editorials, technical perspectives, and letters to the Editor.
http://www.apssci.org/the-journal-of-spinal-cord-medicine.html
- Spinal Cord
Spinal Cord is the official journal of the International Spinal Cord Society. It provides complete coverage of all aspects of spinal injury and disease.
http://www.nature.com/sc/index.html
- Rehabilitation Psychology
Rehabilitation Psychology is the official publication of Division 22 of the American Psychological Association.
http://www.apa.org/journals/rep/
- SCI Psychosocial Process
SCI Psychosocial Process is the official publication of the American Association of Spinal Cord Injury Psychologists and Social Workers.
http://www.unitedspinal.org/publications/process/
- Sexuality and Disability
A journal devoted to the psychological and medical aspects of sexuality in rehabilitation and community settings.
http://www.springer.com/west/home/psychology?SGWID=4-10126-70-35748469-0&teaserId=265706&CENTER_ID=134973
- Topics in Spinal Cord Injury Rehabilitation
Topics in Spinal Cord Injury Rehabilitation reviews and reports on clinical practices, state-of-the-art concepts, and new developments in spinal cord injury patient care and research. Both primary research papers and comprehensive reviews of existing literature are included.
http://www.thomasland.com/about-spinalrehab.html
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About the Authors:
Lynette Ballard earned a master's degree in Social Work from the University of Southern California. She has a bachelor's degree in Sociology from the University of Utah. She is a licensed clinical social worker. She is also a certified bereavement counselor. Ms. Ballard is currently working in the University of Utah Hospital Rehabilitation Center and is designated as the Spinal Cord Injury (SCI) Social Worker for the hospital. In addition to working specifically with the spinal cord injury population she also works with those who have strokes, traumatic brain injury and other neurological disorders.
Sara Klaas is currently the Director of the Spinal Cord Injury Service at Shriners Hospital for Children in Chicago. Sara has been at Shriners Hospital for the last 19 years in a variety of capacities. She has served as the inpatient social worker for the infant/toddler and school-age units, the adolescent unit social worker, the Assistant Director of Family Services, and most recently as the Director of Care Coordination. In addition to these roles, Ms. Ballard has been the Spinal Cord Injury (SCI) team leader for more than 15 years. She received a bachelor's degree in psychology and social work from Mundelein College and her master's degree in social work from the University of Illinois at Chicago, Jane Addams College of Social Work.
Bernie Quell is Program Manager for the EmployAbility Project, a special grant program of the Division of Aging and Adult Services within the Department of Human Services. He is a graduate of the University of Arkansas with a Masters Degree in Rehabilitation Counseling. He is a Certified Rehabilitation Counselor (CRC) and a Licensed Professional Counselor (LPC). His background includes providing direct vocational service and community integration to individuals with traumatic brain injury, chronic mental health issues, and spinal cord injury. He has served as the Educational Director of a Central Arkansas Hospice program and has experience as an Adjunct Professor for the University of Arkansas.
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UN Secretary-General Ban Ki-moon has welcomed the entry into force of the first international treaty on the human rights of persons with disabilities, after the required twentieth country ratified the landmark convention April 3.
"It is a historic moment in our quest for realization of the universal human rights for ALL persons, creating a fully inclusive society for all," Mr. Ban's spokesperson Marie Okabe said in a statement celebrating the rapid progress of the Convention on the rights of Persons with Disabilities, which was adopted in December 2006.
"The Convention will be a powerful tool to eradicate the obstacle faced by persons with disabilities," she said, pointing to discrimination, segregation from society, economic marginalization, and lack of opportunities for participation in social, political and economic decision-making processes.
Today's ratification by Ecuador means that the Convention, along with an optional protocol that will allow individuals and groups to petition for relief, will be legally binding as of 3 May. Tunisia and Jordan also ratified the treaty earlier this week.
Through today's statement, the Secretary-General also congratulated the States that have ratified or acceded to the Convention. Some 126 countries have signed the Convention since 30 March 2007, and 71 have signed the optional protocol.
"It is estimated that there are at least 650 million persons with disabilities worldwide, of whom approximately 80 percent live in less developed countries," Ms. Okabe noted.
As many as two-thirds of United Nations Member States do not have any legal protection for people with disabilities, according to the UN Focal Point on Disability Akiko Ito, even though they comprise one in 10 of the global population.
"The Convention, together with its Optional Protocol, is deeply rooted in the firm commitment of the international community to rectifying the egregious neglect and dehumanizing practices that violate the human rights of persons with disabilities," Ms. Okabe concluded, calling on all States that have not yet done so to accede or ratify it without delay.
In a statement issued this past weekend, more than 20 UN departments, agencies, programmes, and funds pledged their support to implementing the convention.
The newly-formed Inter-Agency Support Group for the Convention said that support will focus on six main areas: policies to support the purpose and objectives of the Convention; programmes including international cooperation; capacity-building of Member States, civil society, and the UN system; research and access to knowledge on disabilities; accessibility; and the Committee on the Rights of Persons with Disabilities.
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It is incredibly difficult for anyone to imagine what it is like to have an amputation or “to lose a limb.” Every part of a person’s life is affected. It is often a struggle to heal from this loss.
Even still, many people with limb loss are living quite normal lives. Many have successful careers, and are beginning and raising families. Many children with limb loss do well in school, develop positive attitudes about themselves, and are involved in all kinds of activities, from sports to dance to fine arts.
And, many in the Limb Loss Community are finding ways to “give back” to the community. One such opportunity is being a “peer visitor.” Peer visitors are people who have experienced limb loss who help other people who are facing or who have had amputations.
Here are some common questions and answers about limb loss:
A. If a person is going to have an amputation, it is very important to be informed. Asking questions and getting information is critical for the patient as well as for the people who will help him or her. Arranging for a peer visitor through the Amputation Coalition of America (toll free 1-888-267-5669), (TTY: 865-525-4512) will get this process started. Ask questions from everyone on the limb loss care team.
A. The limb loss care team is a combination of all professionals (health care and non-health care) who will provide services for a person with limb loss. Social workers are an important part of the team. It also includes doctors, nurses, prosthetists (people who make artificial limbs), physical and occupational therapists, job coaches, government agencies, attorneys, and others.
A. Unfortunately, movies and television often scare us with pictures of people having "amputations." This is also used for political purposes. Most amputations, however, are performed in order to save lives. Recently the media has begun to recognize the human worth in people, regardless of their physical or mental abilities. Today, amputation is not as scary as it was just 20 years ago. (The Americans with Disabilities Act of 1990 has done a great deal to open doors for people with limb loss.)
A. Phantom pain, or phantom limb sensation, is the feeling that the amputated limb is still connected to the body. The person feel different sensations (from a tingling sensation to actual pain) in the missing limb. This is not uncommon, but it does not affect everyone. New pain management techniques have been developed to control phantom pain. These include non-medicine techniques.
A. Again, each situation is different. However, some people get a cast on their residual limb (it is no longer called a “stump”) with a temporary prosthesis while they are still in the hospital. It is not uncommon for this to occur during surgery, as long as there are not extenuating circumstances. It is important to choose a prosthetist and to arrange for a consultation if possible. The prosthetist can then, with the patient’s consent, speak directly with the doctor.
A. According to a very recent study by the CDC (U.S. Centers for Disease Control and Prevention) about 1.9 million Americans live without a hand, arm, foot, or leg. That is about 1 in 200 people.
A. Many people with amputations (people with limb loss) are not necessarily easy to pick out, particularly if they are wearing a prosthesis (artificial limb). Don’t expect to see them restricted to their homes, or in institutions. You would really be surprised who around you is an amputee.
A. There are many reasons for “surgical” amputations (amputations performed in surgery). The most common include disease (like uncontrolled diabetes, vascular disease, and certain kinds of cancer), trauma (including motor vehicle accidents, work related injuries, and combat related injuries), and birth defects (also known as “congenital limb loss” where a child is born without one or more limbs).
A. Limb loss is present in every part of the population: Adults and children, men and women, people of all races — it does not “play favorites.” The people who are at the highest risk for amputation, however, are people who do not have access to quality health care. (Source: Connections, published by the Amputee Coalition of America (ACA) National Limb Loss Information Center.)
A. As mentioned earlier, social workers are part of the limb loss care team. Hospital social workers can facilitate communication between the patient (and patient’s family), physicians, hospital staff, and other health care professionals outside the hospital. In the role of discharge planning, social workers can help arrange for safe discharge after hospitalization, whether directly home, to a physical rehab, or to another destination.
Clinical social workers can talk with, and listen to, people affected by limb loss. Caregiver support is a very important role of social workers. Social workers are educators, not only for the limb loss community, but also for the general community. Finally, social workers act as advocates to help people with limb loss obtain needed services, and to remove that prevent people with limb loss from enjoying the rights, and the privileges, to which all people are entitled.
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Introduction
Parenting a child with special needs creates turning points that reshapes the course of marriage and lives. (Facing what is truly important, we choose to either grow or stagnate) Not necessarily. While we have come to the forefront in learning how to advocate for our child, we can also learn how to think, respond and behave differently when it comes to our partner. As we have undoubtedly taken many "necessary" risks on behalf of our child, can we challenge ourselves to do the same for the health and well being of our marriage? In not attending to our marriage we risk feeling more like individual parents to the exclusion of our couplehood. This article invites you to consider several ideas and perspectives for "necessary" risking and shares the experiences and wisdom from couples with whom I've been privileged to work.
The way each person copes with having a child with special needs is the attempt to re-establish equilibrium when feeling off balance or out of control. Our style of coping can bring out the worst in us as we can revert to familiar and defensive patterns. Does this behavior get us what we really need? Probably not. Do we feel supported by each other as friends? Definitely not. While our old ways of doing what we have always done may be comfortable, in the long run they may not be truly comforting. By recognizing our or our spouse's intention, we can choose to change to a more positive coping behavior. Acting from a place of love, wanting the best in our marriage, we become willing to alter our behavior to achieve a more fulfilling relationship.
In speaking with Jan and Rick, Jan said, "Rick, I know you are hurting [angry, sad]. So am I. I sense you feel scared [helpless] also and I see you are trying to get better control [by your behavior]. We are in a bad place right now. Can we stop and find another way to work together to tackle this?" Speechless, Rick appeared to melt. He had no one to push against or resist, only good will, friendship and love.
Cultivating awareness of our mutual predicament, as well as appreciating the intention of our partner's or our behavior, minimizes throwing out the baby with the bath water. We are still accountable for our behavior. If we don't face ourselves, go into our pain and ultimately go through it, it will not go away. What is hidden and disowned resurfaces in some other less desirable and hurtful form.
Tom and Amy have been dealing with their intentions and their behavior with their daughter as well as within their relationship as a couple. Their daughter, Katie, has ADD and learning disabilities and receives special educational services. Speaking very candidly of his own father's unavailability, Tom promised he would never neglect his family.
I said, "Many women are viewed rightly or wrongly as experts on meeting their child's needs and men often take the back seat." Tom replied, "I see it all the time. Fathers tell me how they get home late to avoid chores." I asked "What can a wife say when her husband does the ‘not now or leave me alone' behavior?"
Tom responded, "Ask him what kind of relationship he wants to have with his child?" "What kind of relationship does he want his child to remember twenty years from now?"
Tom got to the core of the issue. It is not about nagging or coercing, it is about wanting to have a real father-child relationship, not one in name sake only. I asked about husbands backing off because they wind up feeling like they can't parent as well as their wives. Tom said he and Amy acknowledge that they handle things differently. Women need to allow for this and "not correct their husbands's style." He described how they put their children to bed differently on the nights the other one is not home and that it works well. This means, for women, letting go of being the expert on their child's needs and making room for their husbands to do things their way even if it is different. This means for men, being willing to really hear and take their wife's concerns to heart.
To reduce the stress in our marriage we need to leave our comfort zone and take the risks necessary for change. Here are more tools and perspectives.
When stressed, ask yourself "Is my communication getting me what I want and need right now?" The necessary risk here is in doing something more appropriate and novel, perhaps akin to what we try to develop in our children's social skills repertoire. For example, can we:
- Bring good will and a desire to work things out as friends. Find what you really like and appreciate in your partner. If good will can't be found or doesn't exist, try acting as if it were there. If we feel stuck, we might be in more trouble than we can handle alone. We need to check inside ourselves to see if we are willing to ask for help.
- Listen to each other without immediately interrupting or discounting. In marriage it is not about proving we are right and the other is wrong. It is about taking in your partner's point of view or the intention hidden beneath the surface of his/her behavior.
- Express feelings in "I" statements. Give ourselves permission to be open. Bring a lightness of heart where possible.
- Develop the capacity to negotiate and compromise. Ask for what we need and what our partner emotionally needs from us. Remember, asking doesn't necessarily mean getting, especially if your partner needs to save face. The results may not come immediately.
- Invite the less involved parent to share the problem by letting go of some responsibility. Ask the back line parent to be more willing to step into the previously avoided center of concern.
- Do not bring up all the unsolved issues at once. What feels like a release of tension to one, may feel overwhelming to the other. It makes coping unwieldy and doomed to failure. Learn to resolve one issue at a time even if they are intertwined. Find your patience. We do not have to work out everything that bothers us right away and of course, watch out for provocative hooks such as you "never," "always," and "forever."
Can we find a way to live with what isn't solvable with some humor or accommodation? Each has to learn how to live with parts of our spouse that we do not like or cannot change. What is unsolvable may not have to be a marriage deal breaker, unless it is harmful in some significant way.
Couples need to deal with the special needs issues as part of the whole, not the whole of their lives. This requires the utmost belief that this is truly necessary. As partners, we can become aware of the needs of our whole family, breaking them down into manageable parts. Spend time that is fun, normal and non-conflicted all together and with each child.
Husbands and wives need couple time, apart from parenting time, where we purposefully turn towards each other to nourish our relationship, share common interests, laugh, go on a date together, be intimate and be friends. With thoughtful awareness, creating time and preserving energy, this can be done. Couplehood is never what it was before children. However, it can be co-created anew in this phase of married life.
Each of us needs time alone for renewal, to be with friends and to pursue our interests. A group of mothers recently told me how they need time for themselves, where they are not taking care of children or their husbands – 100% self-time. Self-care does not equal selfish. Men need the same and usually feel more comfortable taking it for themselves through working out or engaging in some pastime.
Being married and having children, let alone a child with special needs, requires us to do things we never imagined we would do. For our marital relationship to survive and even thrive, we have to take many "necessary" risks to get us what we authentically need. What initially feels daring and frightening can become part of the exciting and rewarding journey of sharing a life together. Telling each other, "Aren't we worth it and isn't our family worth it" is crucial in healing the inherent pitfalls in any special marriage.
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Introduction
Before television journalist Geraldo Rivera's 1972 expose of the horrors of Willowbrook Hospital in Staten Island, New York in which thousands of children and adults with mental and physical disabilities were abused and neglected, the topic of disability was generally not even mentioned. Parents of newly diagnosed children with disabilities were simply advised to place their children in institutions and forget about them. Although society has moved away from this philosophy, the pain and anguish that families of children with disabilities experience still exists.
When parents are faced with the diagnosis of disability at the birth of a child, to manage successfully they must come to terms with the loss of the normal child they had anticipated as well as the accompanying dreams. Discovering that one's child is disabled is indeed as traumatic as experiencing the death of a beloved family member. Caregivers need to find ways to restore normalcy and dignity to their shattered lives in order to cope with the challenges before them.
Parents of children with disabilities grieve the loss of dreams and expectations of what parenthood has meant to them. Instead of joy at the birth of their child, parents often experience guilt and shame. After having spent nine months preparing for the birth of a healthy child, parents suddenly find themselves shocked, saddened and angered, yet reluctant to express grief because their child is alive. The loss that parents of children with disabilities face differs from other types of loss such as the death of a child, in that there is no actual ceremonial period of mourning to end the grieving process, and that the loss is often intangible as it is tied to dreams.
In order to move forward parents must ultimately accept the reality that their child will likely have differences and thus they must work to obtain the required services and medical care to begin the process of healing. At some point a shift occurs which can be either maladaptive leading to excessive dedication or neglect, or adaptive, in which case parents adjust their parenting as they meet their child's needs.
When loss appears perpetually visible and unending, there are methods of coping which include:
- Learning to focus on what the child is able to do. Children, no matter how seriously disabled, will in time accomplish something they have never before done, whether transferring an object from one hand to another or showing amusement at a sight or sound.
- Talking about feelings by reaching out to others. This includes family, friends, professionals, and spiritual connections.
- Joining a support group. Over thirty years post-Willowbrook, families have turned into activists. Support groups provide caregivers with an opportunity to share and learn form others thus alleviating the isolation that many experience as a result of having a child who is different from peers.
- Journaling. Although not everyone feels comfortable writing, it is a wonderful way to express feelings of loss and grief. Writing to congressmen and other politicians to ensure that benefits for individuals with disabilities are maintained and improved can be rewarding and empowering.
- Making time for one's self. Compromising physical and emotional well-being is not beneficial to anyone. It is important to exercise, spend time with friends, participate in groups, classes, or any means of self-expression where the parents' interests are at the center of the experience.
- Seeking help when needed. This can come from family, friends, community organizations, respite care, health care professionals, the internet, any available and appropriate resource.
- Learning how to redirect focus. One cannot continually catastrophize. Oftentimes parents state that they will never again smile, laugh, or enjoy life. This kind of bleak viewpoint can be challenged with the question, "Of what value will that be to your child?"
- Recognizing problems that may never be experienced. Most children who have severe disabilities often require supervision and assistance. Such supervision often enables the child to take part in pursuits other than many illegal activities undertaken by children without disabilities.
The purpose of this article is to enable families, caregivers, and professionals to understand that when there is life, there is hope and that physical and mental health are not necessarily the sole determinates of happiness. It is helpful to reject negative concepts as the only emotions parents experience and replace those concepts with more positive notions. The experience of what may be perceived as an undesirable life event, whether by accident or illness, can produce growth and positive change in the quality of life and values that families embrace. Most families acknowledge that having a child with disabilities, no matter how severe, brings gifts that are joyously indescribable.
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Introduction
A cochlear implant is a small, complex electronic device that can help provide a sense of sound to a person who is profoundly deaf or severely hard-of-hearing. The implant has an external portion that sits behind the ear and a second piece that is surgically implanted under the skin.
The implant does not restore normal hearing, but it does increase the ability to hear sounds. The device is significantly more effective than a hearing aid in boosting a deaf child's ability to use and understand speech. Hearing aids increase the loudness of sounds so that they may be heard by damaged ears while cochlear implants send signals directly to the brain, which then recognizes the signals as sounds.
Recent advances in the development of cochlear implants have opened up new opportunities for thousands of deaf children in the past few years. Parents considering this option for their own child must weigh the benefits and risks to determine if the device will potentially improve their child's quality of life.
The implant is surgically placed under the skin behind the ear, and an electrode is inserted into the inner ear. External components include a magnet, which is aligned with the internal magnet, a microphone, and a speech processor.
The surgery takes about three hours and costs from $40,000 to $60,000, which is covered by most insurance companies, including Medicaid, according to the National Association of the Deaf.
Cochlear implants were first approved in the early 1990s for adults over age 18. In 2002, the Food and Drug Administration (FDA) approved the use of the device for children as young as 12 months. Research shows that the earlier the device is implanted, the better the outcome for spoken language development.
FDA criteria for children who are candidates for cochlear implants include:
- Age one year or older
- Bilateral profound hearing loss
- Documentation of no significant benefit from hearing aids
- Evidence of strong family support
- No medical contraindications to surgery
- Receptive and supportive educational system
Physicians cannot guarantee that a child who receives an implant will develop spoken language or will communicate more effectively than a deaf child who is exposed to early language without a cochlear implant. The benefits of the device depend on several factors, including the parents' and child's willingness and ability to schedule weekly appointments, consistency of use, and ability to afford additional costs, such as batteries and maintenance. These costs can add up to as much as $1,000 per year.
Parents must be willing to invest some time and money for their children to receive optimal benefits from the device. The social and psychological implications of the surgery must be considered as well. The cochlear implant is somewhat controversial, particularly in the deaf community.
Many people who are deaf do not consider their lack of hearing ability a medical condition to be cured. Instead, they feel that the deaf community is a social network with its own language, culture, and identity.
In addition, parents must determine if their child is old enough to decide to have the surgery and use the device. Some teenagers stop using their cochlear implant, complaining that it sets them apart from their deaf peers, or interferes with their identity as a deaf person. Others stop wearing the cochlear implant because they feel it is ineffective.
The cochlear implant is a marvel of new technology, yet parents must be fully informed to decide if the device is right for their child, and recognize that they have many options to consider.
Social workers can provide counseling for families who are making this decision, as well as resources and information about implants. These professionals are uniquely qualified to help parents consider the long-term implications of wearing the device, such as future educational options, which may be determined by how well the implant works.
Even when a child seems to be an ideal candidate for a cochlear implant, social workers can help parents sort through the important facts and ethical implications and review all options before electing surgery.
###Reference: "Helping Parents of Deaf Children Explore Cochlear Implants," by Beth G. Betman, ACSW, LICSW, PRT-S published in the National Association of Social Workers Specialty Practice Section School Social Work SectionConnection, Issue One 2006
Resources: The National Institute on Deafness and Other Communication Disorders
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Introduction
In the months since New Orleans was devastated by Hurricane Katrina, I have learned not only what it means to––as the song goes––miss New Orleans, but I also got some pointed instruction about a lot of other stuff that I wish I never had to learn. Then again, maybe they were lessons I needed to learn. But I can think of about a million other ways that I could have gone about it. Katrina was one of the worst things I have ever experienced—and that includes the twelve surgeries I have endured in my lifetime.
My story actually begins on Friday, August 26, 2005. We had received an e-mail that afternoon that we were on high alert because—despite the fact that it looked like Katrina was headed for Florida—forecasters were predicting that the storm would turn toward New Orleans and the mouth of the Mississippi River and, that if this happened, the city would take a direct hit. Most of us, however, paid little attention to the warning since the storm had just passed over the Florida Keys and was headed straight for the panhandle. Nonetheless, by the time I got home from work, Katrina was, indeed, turning and was probably going to head straight for us. I sort of began to pay attention at that point, but I didn't get alarmed. I went on with my rather boring Friday night as usual. But when I woke up on Saturday, the president of Jefferson Parish (parishes are like counties in other parts of the United States) where I live and which is the parish right next to Orleans Parish, was declaring a mandatory evacuation for the lowest lying areas, and a voluntary evacuation for everyone else. I still decided to just wait and watch. In the 15 years that I have lived in New Orleans, I've always stayed and nothing really horrible had ever happened. If this was just another one of those times, I wasn't going anywhere.
The reason that I didn't want to leave is because—for me and all other persons with special health care needs—evacuating is more than just a pain in the *#$%, it's downright difficult—especially if you live alone and are the proud owner of two very spoiled, geriatric cats that don't travel well. So packing up body and soul and shoving Chrissy and Bucky into carriers (I tried convincing them that the carriers were brand new kitty beds, but they didn't fall for it) and, driving 55 miles to my mother's house in a contra flow––where all lanes, on both sides of the Interstate, flow in the same direction––that was going at a snail's pace while Chrissy and Bucky howled the whole way was not my idea of a good time and definitely not the way I wanted to spend my weekend. After all, aren't we supposed to relax on the weekend?
To add insult to injury, I knew that somewhere along the way I was going to have to go to the bathroom. And with rain beating down on the roof of my car. . . need I say more? Consequently, I decided to watch the weather reports on Saturday and if it still looked like Katrina was coming and if it remained anything above a Category 2 hurricane, I'd leave on Sunday.
So I spent Saturday making lists of things that I needed just in case I had to evacuate while keeping a close eye on the weather reports. When it was announced that the contra flow for Interstate 10 out of the city would begin at 4:00 Saturday afternoon and would be in effect for the next 24 hours, I began to think that this might just be THE ONE. But, I still wasn't getting too alarmed. Afterall, New Orleans' Mayor Ray Nagin was only calling for a voluntary evacuation. Maybe this was "much ado about nothing" once again. The fact that the leaders of every other parish in the metropolitan area were calling for a mandatory evacuation should have told me that this was serious. By 8:30 Saturday night, I made my decision to leave on Sunday.
I awoke bright and early Sunday morning to learn that we would surely get the storm, and it would probably be a direct hit. As you know, most of New Orleans is below sea level. So, if Katrina came up the mouth of the river as predicted, New Orleans could expect an 18 foot storm surge. Denial, however, is a wonderful tool and, using my tool, I proceeded to pack five days worth of clothing, as well as anything else I thought I might need for five days and––in a stroke of insight––I grabbed the good jewelry and the important papers just in case, and took off with two screaming cats in tow.
When I awoke Monday morning, August 29, we thought New Orleans had dodged the bullet. It seems the eye of the storm had gone just east of the city. Parts of southeast Louisiana, however––the area around Slidell and the Mississippi Gulf Coast–– had been hit hard. The few photographs I saw reminded me of pictures taken following Camille in 1969. But New Orleans was in fairly good shape, so I figured I'd be able to go back home in a day or two.
I figured wrong. At about 9:30 Monday morning we lost power in Hammond, where I grew up, which is about 50 miles north of New Orleans and about half-way between New Orleans and southwest Mississippi. It turned out that Katrina was a huge storm and Hammond and the surrounding areas had sustained monumental wind damage. When you live in south Louisiana, however, where tropical storms and hurricanes are common occurrences, you have "battery-operated Everything." I dug out my battery- operated television set, but the blasted thing didn't work, so I had to resort to the radio. I learned there had been a breach in the 17th Street Canal levee and parts of New Orleans were beginning to flood. Then the announcement came that the London Avenue Canal levee had breached and, possibly, the Industrial Canal levee, as well. It didn't take a rocket scientist to know that New Orleans was in real trouble and, before long, the city was under six feet of water. St. Bernard, Plaquemines Parish, and parts of Jefferson were under water, and it was getting deeper by the minute.
By late afternoon and early evening, there were reports of neighbors rescuing neighbors in boats and people breaking out of their attics where they had climbed, trying to escape the flood waters. For days, as the flood waters continued to rise from the levee breaches, first responders and others worked around the clock to rescue as many people as possible from the hardest hit areas of the city––all the while waiting for FEMA, but that's another article.
As people were rescued, they were brought to the Louisiana Superdome, which was the shelter of last resort as well as the Special Needs Shelter for New Orleans. Finally, when the dome could hold no more, the overflow was taken to the New Orleans Convention Center. To say that the conditions in either of these buildings were less than adequate is a gross understatement—particularly for people with special health care needs. There was no electricity, no running water, and because the roof of the Dome was damaged early on Monday morning, there were leaks everywhere. Needless to say, it became very difficult to care for people with special needs under those conditions. We are just lucky that nobody died—although we did have some traumatized doctors and nurses who worked around the clock to care for the people who were there. All one of these doctors would say shortly after Katrina was that it was "horrible."
It is estimated that approximately 10,000 people did not evacuate during Katrina. It's easy for us to say what they "woulda, shoulda, coulda" done and, granted, some people are just plain stubborn, but, other people did not have the means to evacuate. New Orleans is made up of people of all socioeconomic levels and 28% of our citizens live at, or below, the poverty line. Many do not own a car; they couldn't just load up the SUV and get out. Of those 28% at the poverty line, there is a fairly large spinal cord injured (SCI) population because gun violence has been a common occurrence.
Most of these are young men from the inner city with no education and no work history prior to getting shot and now surviving on Social Secuirty checks. It became one of my daily rituals to access the New Orleans newspaper on my computer to see how many people I knew from my years at Charity Hospital were pictured, or whose names appeared on the lists of known dead. It was not uncommon to see at least one every day. This added, not only to my grief, but to my survivor guilt. Many of these people did not own an automobile and unless someone came to get them, they had no means of getting out.
As a result, the death toll in New Orleans from Katrina is was 1,000 and counting. Because some areas were completely destroyed and contain structures that were deemed unstable, these areas were being bulldozed. Before they are destroyed, however, search and rescue teams with cadaver dogs continued to find bodies.
What lessons have we learned from the biggest natural disaster in US history? Frankly, I'm not sure. I'm embarrassed to say that the federal, state, and local governments can't stop blaming each other long enough to find out and the mayor seems to be too busy running for re-election. The Army Corps of Engineers can't agree on how to fix the levees so that we can have, at the least, Category III protection. Of course, they didn't admit until very recently that there was, indeed, a design flaw in the original levees and it was this design flaw that caused the breach in the first place.
But I can tell you the lessons that they should have learned. First and foremost is the fact that a shelter located below Interstate 10 is illadvised. Almost all of that area is at, or below, sea level. Spend whatever money it takes to open the shelter of last resort at the Superdome and bus folks out of there. You'll kill two birds with one stone. You'll save lives and you won't have to sell flooded-out buses on E-bay.
Second, make provisions for the population with special health care needs. In many parts of the state, the Office of Public Health coordinated Special Needs Shelters. I'm happy to say that these ran very smoothly in every part of the state except New Orleans. But I can honestly say that this was not the fault of the Office of Public Health. The Special Needs Shelter was in the Superdome where nothing ran smoothly. But when you and 30,000 of your closest friends are in there with no electricity and no running water. . . Need I say more?
Third, have evacuation plans for hospitals and nursing homes and make sure they are properly executed. The hospitals in New Orleans did things according to plans they had filed with the Department of Health and Hospitals. I worked in hospitals long enough to be familiar with those plans. In a situation such as Katrina, those plans were simply inadequate. Once again, there was no electricity and no running water, and because this went on for so long, generator power was giving out. There were many reports of hospital personnel bagging patients for respiration for hours. And regarding reports of euthanasia––I don't know and I don't want to know. I do know, however, that there were lots of heroes in the hospitals of New Orleans. But patients in hospitals below Interstate 10 needed to be evacuated sooner rather than later. Unfortunately, several New Orleans nursing homes did not evacuate patients in accordance with the evacuation plans which they, themselves, had established. Because of this, many vulnerable elderly people and persons with disabilities lost their lives. Fortunately, there are several bills that have been pre-filed for the present legislative session providing for the evacuation of patients in hospitals and nursing homes.
Fourth, there needs to be an established protocol for people for whom the Special Needs Shelters are not appropriate. This includes people who have latex allergies and severe mental illness, among other issues. Many of the area's most vulnerable patients, whose needs cannot be met in the Special Needs Shelters, do go to area hospitals. But if a person has spina bifida and a severe latex allergy, but is otherwise healthy, neither option is appropriate. They don't need hospital care, but they could die from anaphylaxis in a shelter—even a Special Needs Shelter. So unless these people have family or friends outside of the city, they have no choice but to take their chances at home. And, frankly, I don't consider that to be a viable option in a severe storm
There are many other lessons that came out of the Katrina debacle. Parts of New Orleans look exactly as they did months ago. Jefferson Parish is up and running for the most part, as are parts of uptown, downtown, and the French Quarter. No longer do you see sign after sign for workers being offered $1,200 sign-on bonuses for Wendy's and Burger King, although there are still "blue roofs" and piles of debris everywhere. The Corps of Engineers continue to work on shoring up the levees. My only hope is that the next time this happens, we will take the lessons that we have learned the hard way and apply them.
Many of us have been working with several organizations on behalf of people with special health care needs. Loss of durable medical equipment (DME) has been a major issue and getting them replaced, either through either insurance or Medicaid, takes forever. Getting things replaced requires a prescription and if your doctor has evacuated and not come back yet, it makes things all the more difficult. We have also had to figure out ways to get equipment and supplies to people who are now temporarily residing in other states and who have Louisiana Medicaid, but whose doctors are nowhere to be found. This has taken lots of coordination but, thankfully, many organizations have stepped up to the plate and purchased things for people who lost equipment in the storms.
In addition, many, many people need information and referrals for post traumatic stress disorders, depression, and anxiety. Sadly, a large number of these people do not have insurance, either because they never did, or because it evaporated when they lost their jobs due to the storm, nor do they have the funds to pay for needed treatment. As a result, we have had to come up with innovative ways to get their needs met through grants and/or faith-based organizations.
One of the major lessons we have learned was how woefully inadequate our planning was for our special needs shelters. Instead of having a special needs shelter anywhere in New Orleans, plans are being made to have shelters in another part of the state so that people with special health care needs will not need to stay in a facility such as the Superdome until it becomes unbearable and, then, be shipped out to another facility. Happily, more organizations outside the Office of Public Health, are beginning to pay attention to the needs of people with disabilities and special health care requirements during natural disasters.
Prior to Katrina, this was a largely forgotten population. Because of the high death toll, however, people are beginning to pay attention. There has been a three-day conference in Baton Rouge of people involved in emergency preparedness planning that I was supposed to attend, but had to cancel at the last minute. My reason for wanting to go was to ensure that these emergency preparedness folks addressed the special needs of people with disabilities during the next disaster much more effectively than they did this time. Conference coordinators assured me that this was a large part of the conference.
Katrina has affected all of us in many different ways. For me, personally, even though I suffered no material losses, I've had to deal with my feelings about being a person with a disability who had been affected by Katrina. And, being your typical "Type A" personality, that's something I do not like to dwell on.
To begin with, even though my New Orleans apartment was perfectly intact, I couldn't go home because there was no infrastructure—not even a 911 system. One of the three hospitals in the metropolitan area that were up and running was the one that I use, but if I'd had a shunt failure, for example, and could not drive and needed ambulance transfer, I was out of luck. Also, the things that make my life easier by preserving energy, like drive-up windows, weren't available. We were also back to the days when grocery stores and drug stores closed at 6:00 due to lack of staff, or were not open at all. Consequently, many of our basic needs either were not met or were more difficult to get.
I also had to deal with a great deal of guilt over being exempt from working with my colleagues at the special needs shelters. But they had all the work they could say grace over, and they didn't need an extra person that might, herself, need some help. Yet, because they needed some of the skills that I had, I had a really tough time with the emotions that came from my non-participation. Katrina has also left me with a fear that I've never had until this disaster––as I said earlier, I'd never evacuated before. I would just hunker down with my feline buddies in my room with a battery-operated television, radio, clock, the trusty Maglite™, Coleman™ lamp, my laptop, a good book, and my emergency jar of peanut butter. But next time anyone mentions hurricane, I'm heading north. One more storm like this and I'm out of here. I'll commute to work for the next six years or until I can find another job.
Nonetheless, after seven months I have finally been able to return to my apartment. My office building downtown, however, was destroyed. Because so many office buildings were lost, office space that is still intact, or that is in Jefferson Parish, is scarce and rents are through the roof. So, for awhile, with no office in New Orleans, I was lucky enough to be able to work out of the office of one of our contractors in Hammond and continue to live at my mom's house. But I am finally at home where I no longer have to remind someone that I am a fully independent adult who is quite capable of making her own decisions.
Before I close this article, I'd like to take this opportunity to thank each and every one of you who contributed the funds to help the people affected by Hurricanes Katrina and Rita. The outpouring of generosity was overwhelming and I appreciate it more than you know. Many, many people down here lost absolutely everything they owned—and many are still fighting with their insurance companies over who's going to pay for the damage. Plus, FEMA recently provided us with the new flood maps that they promised long ago––people have not been able to re-build because they don't want to spend thousands of dollars on construction, only to learn that they have to raise their houses eight feet off the ground. Consequently, it has been difficult to begin to heal from the trauma and we are seeing increasing numbers of people with depression, anxiety, and post traumatic stress disorder.
Thankfully, many mental health organizations have offered assistance. Also, there are several bills that have been pre-filed in the legislative session regarding mental health services for hurricane victims. The legislature, however, has to approve the bills first, so let's just hope that they show better judgment than they have in the past and appropriate the necessary funds. Let's also hope that we have another 40-year gap between Katrina and the next hurricane like we did between Betsy and Katrina. Unfortunately, since the powers that be have predicted more active hurricane seasions in the future, I'm less than optimistic. But one can hope.
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Posted in
Disabilities, Health And Wellness, Real Life Stories |
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