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The Rap Sheet Summer 07 the Right to Communicate, text version

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The Rap Sheet Summer 07 the Right to Communicate, text version ...

    THE RAP SHEET Text version

THE RIGHT TO COMMUNICATE

Welcome to the Summer Issue of the Rap Sheet focusing on the power of communication. The

    desire to make personal connections and to be known and understood by others is universal.

    However, for some the simple act of communicating can be an enormous challenge. We hope

    the stories in this issue will inspire you to truly pay attention, to reach out, and to listen with your

    heart.

INSIDE THIS ISSUE

    • Quality Indicators for Augmentative and Alternative Communication

    • Funding Sources for Assistive Technology

    • Rights to an Interpreter • Personal Stories

AAC Is the Means: Meaningful Participation Is the Outcome

    Michael McSheehan, Clinical Assistant Professor,Communication Sciences & Disorders, Project

    Coordinator, Institute on Disability, UNH

Communication is the means through which we engage in life. The expected outcome of

    Alternative and Augmentative Communication (AAC) services and supports is increased

    participation in life. If AAC services and supports are not having this result, something needs to

    change.

Charlie is a fifth grade student who communicates using AAC. He and his team just won an end

    of the year reading competition based on their recall of books that the class had read during the

    year. In preparing for the competition, the team not only talked about characters, settings, and

    plots, they also joked with each other, shared personal insights, and encouraged one another. For

    Charlie, just being a part of this team is cause for a major celebration.

Two years ago, things were quite different. As a third grader, Charlie was described as “low

    functioning” by his teachers and family members. He received most of his instruction from

    paraprofessionals who used materials that were created to address his IEP goals, materials that

    were not connected with the classroom instruction. Seated in the back of the room, Charlie only had occasional opportunities (during snack and at recess) to interact socially with his classmates

    and he never interacted with them or with the classroom teacher during academic lessons. He

    had a small, portable AAC device that when a button was pushed played one of nine

    programmed messages (Hello, Goodbye, More, Hungry, Bathroom, Break, Mad, Yes, and No).

    The team reported that Charlie only pushed the buttons if he was “highly prompted.”

Charlie‟s team, which includes his family, wanted things to be different. They wanted Charlie to

    engage more with other students, to use his AAC more, and to be an included member of his

    class. To bring this about, Charlie‟s team explored the following three strategies.

First, the team reflected on their own perceptions about Charlie‟s ability to learn and participate

    in class. The team realized that their perception of Charlie as “low functioning” was influenced

    in great part by how little he communicated. The team‟s perception determined the messages that

    they programmed into his communication device. With an extremely limited communication

    system, Charlie could only demonstrate limited abilities. Charlie‟s team wanted to break this

    cycle. They provided Charlie with a much more sophisticated communication system that

    included hundreds of pre-programmed messages. They did not require Charlie to demonstrate

    mastery or understanding of new vocabulary before programming it into his ACC. His new

    device, which he uses throughout the day across all settings, has computer-generated speech

    designed to sound like a child‟s voice.

Second, the team took stock of the methods they had been using to teach Charlie. Receiving

    pull-aside instruction from special education staff was preventing him from having opportunities

    interact or communicate with his classmates and with the classroom teacher. To change this, the

    team planned for Charlie‟s increased participation in classroom instruction and activities by asking and answering four basic questions (based on Jorgensen, 2005):

    1. What are all students doing? (e.g., Are they reading in pairs, working in groups?)

    2. How are students communicating? (e.g., During reading students look at and turn pages

    in a book. Students talk about the process “What page are you on?” “This is

    hard/easy.” Students speak about the content – “I like the main character.” “Why did the

    main character do that?”)

    3. What communication materials need to be in place for Charlie to do and communicate the

    same things as classmates? (e.g., Can we develop a communication display to ask

    questions or comment about the reading process? Can there be a communication display

    to share information, ask questions, or make comments about the reading content?)

    4. What planning and preparation is needed? (e.g., Classmates and the general education

    teacher need to be coached about how to use the communication displays to interact with

    Charlie.)

Third, the team considered how most students learn to communicate and explored teaching

    Charlie in a similar way. Beginning communicators gain communication skills, in part, through

    interactions with other communicators. Charlie‟s team wanted him to have the benefit of

    communicating with lots of people in school. For students using AAC, there is another

    important challenge to consider: How to create a culture that values and models different ways of

    communicating. When a child is deaf or hard-of-hearing, a sign interpreter may be brought into

    the classroom to sign all spoken language. This not only shows the signing student “We value

    how you communicate,” it also provides the student with a model for what signed fluent

    communication looks like. For students using AAC we can create such cultures by immersing

    students in activities where all students use AAC and where instruction shows values for AAC

    communication. Charlie‟s team distributed copies of his communication displays to all of his

    classmates and put extra copies in the various learning centers around the room. During paired

    or group activities, classmates were coached to use the displays to communicate with Charlie,

    each other, and even to share information with the classroom teacher. The teacher hung a copy

    of Charlie‟s main communication display in the front of the room and pointed to words on the

    display when she spoke to the class.

The team‟s willingness to change their perceptions about Charlie and to develop strategies to

    expand his opportunities and means for communication not only opened up a whole new world

    for Charlie, it enhanced the learning environment for all the students in the class. Charlie is no

    longer the boy in the back of the room with nine programmed messages; he is a valued and

    included classmate, and a member of the fifth grade‟s Championship reading team.

Quality Indicators for Augmentative and Alternative Communication

    Michael McSheehan, Clinical Assistant Professor, Communication Sciences & Disorders,

    Project Coordinator, Institute on Disability, UNH

Be an informed consumer of AAC services. It is okay to have high expectations about the

    outlook, philosophy, and knowledge base of AAC providers. The following quality indicators

    will help you decide if the provider of an AAC evaluation or services is promoting inclusive

    education.

? The student has a means to communicate all day long, in all activities.

    ? The student has a means to communicate for a variety of purposes.

    ? The student‟s communication system is programmed with messages to demonstrate

    learning of age-appropriate core academics that are commensurate with his/her

    classmates. The student has a way to communicate the same things as non-disabled

    classmates - academically (sharing information and facts), socially (commenting on age-

    appropriate events and topics), and personally (sharing wants, needs, dreams, and desires). ? The student demonstrates increased use of communication with classmates and teachers.

    ? The student is spending more time in general education classroom, engaged in the same

    activities as other classmates.

    ? The student is spending more time engaged in social and extracurricular activities.

    ? The student is demonstrating increased learning of academics in all subjects.

    ? The student‟s AAC supports take into consideration the communicative functions of

    challenging behavior.

    ? Family members, teachers, and classmates demonstrate a positive attitude about the

    student‟s use of ACC.

    ? People speak directly to the student instead of through a paraprofessional, teacher, or

    family member.

    ? When people speak to the student they use an age-appropriate manner, vocabulary and

    inflection.

    ? Training and support to use the AAC system is provided to the student in the contexts and

    routines in which the student will be communicating.

    ? Training and support to use the AAC system is provided to the student‟s team and his or

    her classmates, in the contexts and routines in which the student will be communicating.

*These ACC indicators are adapted from Calculator & Jorgensen, 1994; Jorgensen, McSheehan,

    & Sonnenmeier, 2002

    This issue of the Rap Sheet is dedicated to Ronald Lospennato, Legal Director for the Disabilities Rights Center. After 28 years, Lospenato is leaving DRC to join the Southern Poverty Law Center in New Orleans where he will direct a national project to reduce the number of children with behavioral disorders who end up in the juvenile justice system. While at DRC, Lospennato has been instrumental in advancing the rights of individuals with disabilities. His legal victories have included: Timothy W v. Rochester School District, a landmark US Supreme Court decision affirming that education is the right of all children with disabilities; James O v. Department of Education, federal class action suit ensuring that court ordered placements meet the educational needs of children with disabilities, and Eric L. v. Department of Health and Human Services, a lawsuit resulted in sweeping reforms to promote in the state‟s Division of Children Youth and Families.

    We thank Ron Lospennato for his years of leadership and his work on behalf of people with disabilities both in New Hampshire and across the country. We wish him the best of luck as he takes on this new challenge. Louisiana is indeed fortunate to have him.

Funding for Assistive Technology

    James Fox, Staff Attorney, Disabilities Rights Center

    With recent advancements in technology, there has been an explosion in the number of technology-based solutions that can be used by individuals with disabilities to improve their quality of life. Being aware of the sources that are available to fund technology will help ensure that that people have access to this support. The following are the major funding sources for assistive technology (AT).

IDEA

    To qualify for IDEA services, a child must need special education and related services because of a disability. The IDEA defines the term education broadly as specially designed instruction that is needed to meet the unique needs of a child with a disability. Technology is provided for in the IDEA and is defined broadly as any item, product, or service that increases the child‟s functional capabilities. The IDEA can be utilized to obtain technology to assist in educational goals, including the goal of transition from school to work. To the extent that a student is not covered by special education, Section 504 of the Rehabilitation Act of 1973 is available to ensure full access to a school and its services.

Medicaid

    Medicaid has been a valuable source of funding of technology. Medicaid is a joint state-federal program, which provides low-income recipients with health care benefits. Medicaid is a vendor payment program that reimburses providers for covered supplies and services on behalf of participants. Technology typically falls into the category of durable medical equipment and/or medical supplies under Medicaid‟s home health care provisions. AT requests must be medically necessary and need to be approved by the New Hampshire Department of Health and Human Services. In addition, children under the age of twenty-one can obtain technology under the Early and Periodic Screening, Diagnosis and Treatment provisions of Medicaid which provide services that are required to correct or ameliorate defects and physical and mental illnesses and conditions.

Medicare

    Medicare covers persons receiving Social Security Disability Insurance. Assistive technology that is medically necessary may generally be obtained through Medicare as durable medical equipment (DME). Medicare defines DME as equipment which:

Can withstand repeated use;

     Is primarily and customarily used to serve a medical purpose;

     Generally is not useful to a person in the absence of an illness or injury; and Is appropriate for use in the home.

    Medicare covers 80% of the cost of DME, at its own approved rate. If an individual is eligible, Medicaid can cover the 20% co-payment. Medicare‟s rates are sometimes less than what

    vendors charge; the consumer is responsible for any resulting funding shortfall. Medicare may also decline coverage if: (1) cost is disproportionate to the therapeutic benefit; (2) a less expensive appropriate alternative exists; or (3) an alternative is already available.

Vocational Rehabilitation

    The New Hampshire Division of Vocational Rehabilitation (NHVR) plays a central role in assisting individuals with disabilities in obtaining employment. NHVR services are intended to maximize employability, economic self-sufficiency, independence, inclusion, and integration into the workplace and the community. Individuals seeking NHVR services must have mental, physical, and/or learning disabilities that are a substantial impediment to employment and require VR services to prepare for, secure, retain, or regain employment. NHVR funding is available for assistive technology including vehicular modification, telecommunications, sensory, and other technological aids and devices. Though NHVR will not pay for a service if a comparable benefit is available through another provider such as Medicaid, NHVR remains a major potential source of AT funding.

PASS Program

    Social Security‟s PASS program is an employment-based program designed to increase the self-

    sufficiency of individuals with disabilities. To be eligible, an individual must: (1) have a disability; (2) meet SSI‟s eligibility requirements with the exception of the income/resources test;

    and (3) have either earnings, unearned income, or resources to set aside. The PASS program must contain a feasible occupational objective and the individual must be capable of pursuing the objective. Attaining an occupational objective often involves the acquisition of technology. PASS has been referred to as a “sleeping giant” as a means for obtaining AT funding.

Private Health Insurance

    Some health insurance policies cover durable medical equipment and other assistive technology based upon medical necessity. Policies providing such coverage usually limit its scope through monetary coverage limits, co-payment requirements, and list of excluded items. Ambiguities about coverage will be decided against an insurer as long as there is a reasonable interpretation that the policy provides coverage. It is important to examine closely policy language to determine the scope of coverage.

UNH Receives Federal Grant to Prepare Speech Language Pathologists in AAC

    The University of New Hampshire‟s Department of Communication Sciences and Disorders and Institute on Disability/UCED received a $800,000 grant from the Office of Special Education Programs, U.S. Department of Education to prepare speech and language personnel to provide high quality augmentative and alternative communication (AAC) services to students with disabilities in general education classrooms. Beginning in July 2007, the funds will support 40+ masters‟ level UNH graduate students and professionals in speech language pathology. For more

    information, contact Rae Sonnenmeier, Ph.D., CCC-SLP via email at raes@unh.edu or by phone at 603-862-1860.

Stranger in a Strange Land

    Julia Freeman-Woolpert, Disabilities Rights Center

    In November 2006 Abdusalam Sadiqi and his wife, Indisar Hussein, arrived in America with just the clothes on their backs and flip-flops on their feet. Four years earlier, Sadiqi had fled his native Burundi where sectarian violence was responsible for the death of all his family and the destruction of his home. During his escape Sadiqi broke his leg, an injury that went untreated. By the time Sadiqi arrived in Ethiopia two years later he was gravely ill with a massive infection that affected his spine and nearly all of his organs. After collapsing, Sadiqi was hospitalized and not expected to live. He spent eight months in a coma. Miraculously, Sadiqi began to recover; when he was well enough to leave the hospital, he and Indisar were flown to the United States as refugees. Their long journey ended in Concord.

    While Sadiqi is very, very glad to be in this country, things here have not been easy. His health, though better, is still fragile and his injuries have left him with permanent disabilities. Sadiqi explained, “I cannot walk long time. When I go long, I pain in spine, in back. Tonight I cannot sleep.” Since arriving in Concord, Sadiqi has made frequent trips to the emergency room and been hospitalized several times.

    For the first few months after their arrival, refugees are eligible for Medicaid assistance and are helped by a resettlement agency; Lutheran Social Services was the agency that worked with Sadiqi and his wife. After the first few months, refugees are typically left to manage on their own. Fortunately, Sadiqi met Kim Harris, a local business owner who has become a friend and mentor for his family.

    “Initially Lutheran brought Sadiqi to the medical appointments, and then they asked him to start taking the bus to come here to Concord Hospital to rehab,” Kim said. “The problem is he didn‟t

    have any sort of walker; he didn‟t have anything. He had one wooden crutch.” (Kim helped Sadiqi get a walker and later crutches.) In the winter making the bus trip to the hospital was difficult. On his way to the bus stop Sadiqi often slipped and fell on the ice. With his compromised health, being out for long periods in the cold weather was especially hard on him. At one point he ended up in the emergency room with hypothermia. Though Sadiqi was in desperate need of rehabilitation services, his doctors advised him to stay home until the weather improved. Somehow Sadiqi missed the information that Medicaid could have paid for his transportation to and from his doctors‟ appointments.

Sadiqi‟s first language is Swahili; he speaks four other languages including English. Indisar‟s

    speaks Amharic and is just beginning to learn English. They are both enrolled in an English language course offered at a local church. Even though English is a relatively new language for Sadiqi, he says he goes to his doctors‟ appointments without an interpreter. Sadiqi‟s understanding of English, especially written English, is limited. During our interview he handed me what he thought were his hospital records, in fact they were Concord Hospital job listings. Concord Hospital provides Sadiqi with written instructions in Swahili, which helps. Although, given his complex medical conditions, - subacute meningoencephalitis, thrombophlebitis, pyelonephritis are but a few of his many diagnoses - it is unlikely that Sadiqi understands everything that he needs to know. Recently Healthsouth, where he receives treatment, assigned Sadiqi a social worker. Hopefully, this will make it easier for Sadiqi to manage his health care.

    When I visited with Sadiqi he took me to the refrigerator and opened the door, inside was a virtual pharmacy with dozens of bottles and boxes of medications. Taking a bottle at random, I asked Sadiqi if he coud tell me what the medicine was, how often he takes it, and what it does for him. He struggled to find even the name of the medication on the label. Kim says that she is trying to help him keep his medications straight.

    Kim is also helping Sadiqi and Indisar with the paperwork for Social Security and Section 8 housing assistance; forms that would be far too complex for them to manage on their own. “It‟s been hard because they don‟t know what is out there. They don‟t have an advocate once Lutheran‟s done with them. If they didn‟t have volunteers, they would have no one to help

    them,” said Kim. “It‟s a big issue, especially being disabled.”

Medical Interpretation

    Over 75 languages are now spoken in New Hampshire. As we become more diverse, there is a growing need for communication access in medical settings for those whose first language is not English. Accurate communication between a patient and medical providers is critical for quality health care, but too often providers are not prepared to provide communication access. At the Foundation for Healthy Communities, the Medical Interpretation Advisory Board has a strategic plan to identify needs, develop the workforce, access funding sources, and raise awareness about the need for medical interpretation for both people with limited English proficiency and for Deaf and hard of hearing individuals. For more information visit their website at:

     www.healthynh.com/fhc/initiatives/access/miab.php

Taking Ownership of One’s Hearing Loss

    Joan Marcoux, MA, CRC, Hearing and Vision Program Specialist, NH Bureau Of Elderly and Adult Services

    It‟s not always easy for a person to acknowledge that they have hearing loss. However, denial of hearing loss can have a serious impact on a person‟s physical and emotional health.

    Why is it so hard for people to admit that they have trouble hearing? Generally people are willing to acknowledge vision loss as soon as the problem is diagnosed. However, people with hearing loss may take several years to acknowledge it or to seek help and some never do. Many associate hearing loss with being old, fear the stigma of being labeled as deaf, or worry that they

    will lose their jobs or be rejected by family and friends. Many people feel that if they keep their hearing problems under wraps they will have better control over their lives.

    People who refuse to acknowledge hearing loss and who do not seek help are making their lives worse, not better. They exhaust themselves straining to hear every word in a conversation. They miss out on important discussions with family and friends or misconstrue what people are saying. As time goes on, they feel isolated, lonely, and depressed.

    Miscommunications - including those with significant and lasting consequences - occur when hearing loss is not acknowledged. I know a man who had a serious medical condition that went untreated because he was unable to clearly hear his doctor‟s questions. This man was guilty of “yes-ing” his doctor and failed to provide the crucial information that his doctor needed for a

    diagnosis.

    There can be enormous consequences when hearing problems are not correctly identified. Years ago, it was not uncommon for a child to be labeled mentally retarded, only to find out later on that the child had a significant hearing loss. Today the use of universal hearing screenings for newborn infants means that early detection of hearing loss is now possible. However, at the other end of the age spectrum, there have been seniors with hearing loss who have been misdiagnosed as having Alzheimer‟s disease or other cognitive impairments. The fact that seniors often try to conceal their hearing problems contributes to the misdiagnoses, and can lead to inappropriate treatment and unnecessary institutionalization.

    So the message is this- hearing loss is not the worst of all evils. Acknowledging you have a hearing loss and getting help can only make your life better. For an audiological evaluation contact an Audiologist or an Ear, Nose, and Throat Doctor. There are a wide variety of assistive devices that can help you. The Hearing Loss Association of America New Hampshire Chapter can provide needed support and information; you can call them toll free at 1-800-351-1888, ext

     8352. If you have trouble hearing, take control of your life and get help now.

Being Understood

    James C. Piet, MS, Public Relations Specialist, NH Department of Education Vocational Rehabilitation

     As a person with a speech impediment I realize that people may have trouble understanding me, this is true even for people I have known for awhile. If you have a speech impediment, it is important to believe in yourself and work to find the best ways to communicate with others.

    For people with disabilities, facing prejudice is part of our daily lives. Although I have a professional job and have earned a Masters Degree, when I start to speak and my body begins to move involuntarily, people assume that I have cognitive, as well as physical disabilities. This stereotyping also happens to my wife Pat who has a college degree, an impressive resume, and happens to have a physical disability. In spite or our educational degrees and professional accomplishments, our daughter still has to explain to her friends why her father speaks funny and why her mother walks funny. Part of our family‟s daily routine is educating people about the realities of living with a disability.

    I have found that different strategies and technologies have helped me to communicate. At home, my family, friends, and support staff generally are able to understand me, however, I do have to repeat myself from time to time. For telephone conversations I use a speakerphone; if the person on the other end is someone whom I have never spoken with I ask my wife, my daughter, or one of my support staff to keep an ear open. In initial conversations with someone who is not familiar with my speech patterns, I may need to ask someone in my house to repeat what I said.

    On my job at Vocational Rehabilitation I use different tools and strategies to communicate. My computer has a voice activated software call "Dragon Dictate" that allows me to use my computer independently to do paperwork and to compose and answer email. As I do at home, I use a speakerphone at work; when I know that I will be talking to someone new I ask one of the office support staff to listen in on the conversation. I always tell the person I am talking with to ask me to repeat anything they don‟t understand. I also let them know that there is a staff person

    who is listening to the conversation and can interpret if that is needed. If I suspect that someone is having trouble understanding my speech I will ask them to repeat what I said to make sure that we don‟t need an interpreter. While I am on the speakerphone, I often ask my support staff to

    take notes for me. This is especially important if there are tasks that I will need to follow up on after the telephone call.

    When I attend a meeting I make a point to speak to the person in charge before the meeting begins to explain how I communicate and to please watch for when I want to say something. This is important because there are times when people at a meeting will be deep in conversation and aren‟t aware that I have something I want to say to the group. During meeting introductions

    I let people know that if anyone has trouble understanding me to please asked me to repeat myself or, if my support staff is with me, I will have that person repeat for me. There are times I can tell from people‟s body language or facial expression that they are not understanding me,

    when this happens I will either repeat what I said or I will have my support person do it for me

    As Public Relations Specialist for Vocational Rehabilitation, I represent the Department in a number of settings; I also do a good deal of public speaking. Being able to communicate is essential; I have found these techniques and tools have helped ensure that people are able to

     understand me.

By Any Other Name

    Julia Freeman-Woolpert, Disabilities Rights Center

What's in a name? That which we call a rose

    By any other name would smell as sweet.

    William Shakespeare

    Disability advocates care passionately about the words that are used to describe people with disabilities. Contrary to Shakespeare, we know our choice of words does affect how we think and feel about others and ourselves, about our relationships, and our place in the world. But at issue is more than the actual words themselves; it‟s about the meanings, associations and emotions they invoke.

This year the New Hampshire Legislature passed a bill to establish a Legislative committee to

    study changing the state‟s statutory references to "mental retardation" and proposing alternative

    language. Members of People First were the driving force behind the legislation. “The words

    (mental retardation) are very offensive to people with disabilities,” explained People First

    advocate Roberta Gallant. Senator Maggie Hassan, a board member for the Disabilities Rights

    Center, was a prime sponsor of the legislation, which received wide support in the House and the

    Senate.

While this legislation is a positive move, changing our terminology can only make so much of a

    difference. Over time the words associated with stigmatized groups tend to take on derogatory

    meanings. When there is an underlying prejudice against a group, a new word or phrase that was

    introduced to convey a more positive image, begins to assume a negative connotation.

    “Pejoration” is the linguistics term for this phenomenon.

Recently the American Association for Mental Retardation changed its name to the American

    Association for Individuals with Developmental Disabilities (AAIDD); this is the fourth name

    change since the Association was founded in 1876. Steven J. Taylor, editor of the AAIDD‟s

    national journal addressed this issue in a February press release, "Anyone who believes that we

    have finally arrived at the perfect terminology will be proven wrong by history. I am sure that at

    some future point we will find the phrase intellectual and developmental disabilities to be

    inadequate and demeaning." This is not about the words, he notes, but about the deeper issues of

    inclusion and acceptance.

This is our real task to create a world where all individuals are valued and respected and where

    no group is stigmatized. Until we do, we will keep chasing a moving target of words and

    meaning.

"And what about words, can I speak without care?"

    "Well, words can be tricky, so say what you dare

    It's Spirit that calls us more clearly than words

    So hear them, use them, but don't you abuse them

    Just wear them as long as you can".

1981 Barbara Mays

    From a song based on a famous interchange between Quakers William Penn and George Fox

    “Supreme Court Waters Down ADA” “Accessability requirements Deleted from the International Building Code”

    “Drastically Disabled 8-year old Undergoes Surgery to Stunt Growth”

Are you as sick of what‟s going on as we are? Join the Revolution!

    Help us Re-ignite the Disabilities Rights Movement!

    Read Able Writer Says at http://ablewriter.com/disabilities_rights_news

    We want to hear from you - send us your comments, suggestions, complaints, ideas

    Together we can change the tide.

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