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Una publicación sobre discapacidades visuales, y sordera y ceguera, para familias y profesionales.

Summer 2000 Table of Contents
Versión Español de este artículo (Spanish Version)

Terry Murphy, Executive Director, Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind)

I've watched with interest over the years how words come in and out of vogue in the human services field. Some changes are easy to applaud, especially when the people most affected by the words seek and win the changes themselves. Because of the hard work by individuals and groups of Americans with varying disabilities, the term "handicapped" has given way to "disabled," and finally to "people with disabilities" in the Rehabilitation Act and other legislation during the last decade.

The latest target for change in this arena, however, does not have my support because the dissenting opinions of the individuals most affected by the proposal—people who are blind—have been ignored. The target I'm talking about is the goal by a few people and organizations to eliminate the word blind from the vocabulary of state legislatures and the U. S. Congress by calling for an end to its separate identity in laws and programs. Advocates for its elimination proffer their opinion that "people with disabilities" sufficiently says it all during human service funding and service debates. Recognition of the special needs of people who are blind is superfluous to the process.

Organizations of and for the blind have worked hard to educate legislators over the years to the unique barriers to employment and independent living posed by blindness because "existing services for people with disabilities" were not being made accessible to people who were blind. One important result of these education efforts is reflected in Title VII of the Rehabilitation Act. Entitled "Independent Living Services for Older Individuals Who are Blind," Chapter 2 provides funds to states to provide independent living skills to older individuals who are blind for whom significant visual impairment makes competitive employment extremely difficult to attain but for whom independent living goals are feasible. These funds, meager as they are, were celebrated across the nation and are used in Texas to prevent individuals from prematurely being relegated to nursing homes or caretakers when advancing age results in a loss of vision. With specialized training in adjusting to blindness, the majority of these individuals can remain in their homes and continue to be self-sufficient.

The Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) hosted a meeting a few months ago to talk about the future of vocational rehabilitation and independent living services, not only in Texas, but also across the country. In the room, the combined experience in the field of blindness numbered well into the hundreds of years. My colleagues and I shared our experiences, reflecting on the latest Texas legislative session when the specialized services provided by the Commission were being reviewed by the Sunset staff. The Commission entered the Sunset process confident in its record and proud that Texas chose the right path long ago when it created an agency with the sole purpose of building an effective system of services for individuals who were blind, including children and teenagers, which is rare in other states.

It was inconceivable to most of us that anyone would want to dismantle one of the best agencies for the blind in the country. Other states had gone that path only to be met with diminishing returns on their investment in services. Unfortunately we were wrong. It soon became evident during the legislative session that individuals and groups calling for an end to separately funded programs for people who are blind in Washington are also active in Texas. Their supporters were primarily advocating for serving people with all types of disabilities out of one Texas agency without having a separate budget for serving people who are blind. One advocate for change said that it is not necessarily accurate that individuals who are blind need that exact allocation of money, adding that agencies will always find a way to spend what they are given. The alternative of combining all human services programs into one elephantine agency with one budget also received some support.

Those of us who have chosen to work in the field of blindness as long as I have are so convinced that the elimination of distinct, separate services and funding would be detrimental that we have renewed our commitment to stay active in the coming months and years in educating the public, legislators, and congressmen about blindness and its unique effects on a person's ability to live and work. I simply do not believe that specialized services for persons who are blind of the same or better quality will be available in any service system where they are the small minority voice among persons with disabilities. It takes someone specially trained in the effects of blindness to be an effective service provider, and my 28 years in the field have only solidified my resolve to fight for the right of Texans struggling for equal acceptance into the world of employment to have dedicated resources for appropriate training and qualified state personnel with which to partner. The old saying, "United, we stand; divided, we fall" has taken on a very personal meaning to me on this particular issue, because cooperation between consumers and organizations of and for people who are blind over these next few years is extremely important.

I'm often asked by parents of children who are blind, "How can I keep up with what's happening? How can I make sure that people trained in the complications of blindness continue to be available for my child now and when he's trying to go into the workforce?" As an individual, you can be extremely effective by sharing what you know to be facts about blindness with your community and state leaders. You can join one of the consumer groups or parent groups that brings together people with the same needs and quest for knowledge about state and national activities that may have an effect—good or bad—on services for people who are blind. Stay involved even when things appear to be going well. Apathy can kill an endangered program just as effectively as the lobbyists already at work.

Congressional activities are already in motion in preparation for the reauthorization of the Rehabilitation Act in 2003. At this time, the Act is still a separate entity within the broader Workforce Investment Act. Vocational rehabilitation programs are only "linked" to local workforce programs—a "cooperative" arrangement. This federal change in 1997 is somewhat similar to state changes in 1999 when the Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) kept its separate identity but now operates under the broad authority of the Health and Human Services Commissioner.

Two forces are alive and well at the national level: A force that continues to want work done by rehabilitation agencies merged or transferred into local workforce programs, and a force that wants to eliminate the states' authority to have separate rehabilitation programs for people who are blind. Either action will potentially eliminate the word "blind" from employment and independent living programs.

Programs for people who are blind were born in an era when leaders recognized that blindness was taking a toll on independence and employment that only specialized services could alleviate. Blindness still takes its toll. However, we have risen from that small beginning where the vast majority of blind people were expected to work in sheltered environments to today's multifaceted program of services where people can choose to pursue a broad range of careers that fits their interests and capabilities.

The people who know best the struggles of finding their rightful place in society are those who are themselves blind. Organizations composed of blind people have fought a valiant fight to have specialized services and will continue to do so as long as service providers listen to them and adjust to identified needs. Organizations composed of parents of blind children, including parents whose children have other disabilities in combination with blindness, have fought a valiant fight to have brighter futures for their children. Many years ago, the Commission was sometimes the object of these fights, but we began to better listen and respond. My personal goal for the past ten years has been to create an atmosphere wherein we stand together rather than stand separately.

If you are blind, if you have a loved one who is blind, or if you merely believe that blindness should not keep someone from participating in society to the highest extent possible, then I invite you to stand with us as we continue our efforts to educate others about the need for specialized services.

Winter 2000 Table of Contents
Versión Español de este artículo (Spanish Version)

Reprinted with permission. Parent Education Project of Wisconsin, Inc.
Information and Consulting on Special Education Issues
<http://members.aol.com/pepofwi>

Editors note: Anyone who has ever attended ARD/IEP meetings knows how stressful they can become. These meetings can quickly get out of control if you haven't done your homework. Even parents who are also in the field of special education, have noted that ARD/IEP meetings are very different when it is for their own child. These parents know their rights, the process, the "right way" to participate; but it can all go out the window with one comment about their child from a professional. Getting a handle on your emotions will make the negotiations more effective. One strategy I encourage parents to use is to schedule informal meetings with their child's teachers and therapists to discuss concerns and review any assessments BEFORE the ARD/IEP meeting. This allows all parties to know ahead of time any issues that need to be addressed. No one likes to be broad-sided. Besides, most of us need time to process and investigate options in order to have an appropriate response. Routine contact between school and home through communication notebooks, phone calls, videotapes, home visits, and classroom visits can prevent the buildup of misunderstandings. Frequent discussions between parents and staff clarifies expectations and takes the edge off the formality of the ARD/IEP meeting itself. The following article gives practical strategies for making your next ARD/IEP meeting successful instead of stressful.

BRING A BUDDY

A recent PEP-WI survey revealed that only about 18 percent of parents are bringing someone (friend, spouse, neighbor, relative, etc.) with them when they go to IEP meetings. From experience, we know that when the parent brings someone to the meeting who is knowledgeable about the child or who has special expertise, the tenor of the meeting becomes more mutually collaborative, more mutually respectful, and frequently more productive. Children's needs remain the focus; all members of the IEP team are more likely to work together to create solutions. You can improve the quality and effectiveness of your child's IEP Team meetings by bringing a buddy. Here are some ideas to help:

  • Pair up with another child in your child's special education program. You go to their meetings, they come to your meetings.
  • Make a friend at a parent support group (like CHADD, ARC, Family2Family, etc.). Agree to buddy-up at meetings. Better yet, attend a PEP-WI (Partners Resource Network) training or two together!
  • IEP Meetings must be scheduled at mutually agreeable times and locations. Recommend times and locations where you and your spouse or significant other can both attend. You have the right to a meeting at a mutually agreeable time and place.
  • If your child receives physical or occupational therapy or counseling outside of school, invite that service provider to attend the meeting. Use conference calling if needed.
  • Ask your child's aunt, uncle, cousin, grandparent or other relative, who has a special understanding of your child, to attend with you.
  • Consider asking a sibling to attend. He or she "knows" your child in unique ways.
  • Invite last year's teacher, aide, or therapist to come.
  • Offer to share YOUR services going to someone else's meeting with them and have them come with YOU.

IF YOU THINK THE MEETING IS GOING TO BE STRESSFUL

If you think that your meeting with the IEP Team is going to be stressful, try these suggestions:

  • Start by talking about some areas you know you all will agree with. Find common ground. Example: I know you have found Jon's behavior difficult to control at times. We have had similar experiences at home.
  • Use AND instead of using the word BUT. "But" acts like an automatic switch inside listeners' minds. It "switches off" the first part of the sentence or message. Example: We need a plan to get my daughter's behavior under control AND we need to keep in mind that she also needs to experience academic success in the general education classroom.
  • Avoid using absolutes: "You always..., We never..."
  • Use positives to help move the conversation along. Example: "What if we tried...?" "Would you be willing to try this ?" "It sounds like it might be better if we..." "Have we thought about this?"
  • Allow your listeners to correct any possible misunderstandings you may have gotten. "Can you help me understand why you...?" "Tell me again why we are..." "Oh, okay, that clarifies that for me a lot".
  • Don't take a position. Deal with a need. Example: "My son needs to feel successful at school. How can we make that occur?"

Information from The Wisconsin Collaborator, PEP-WI, July 1999 published by Parent Education Project of Wisconsin, 2192 S. 60th St., West Allis, WI 53219-1568. Phone (414) 328-5520 and fax (414) 328-5530.

Fall 1999 Table of Contents
Versión Español de este artículo (Spanish Version)

By Phil Hatlen, Superintendent, Texas School for the Blind and Visually Impaired

For the past two years, a group of writers has been working hard drafting a new publication called "Blind and Visually Impaired Students: Educational Service Guidelines". The National Association of State Directors of Special Education (NASDSE) is in charge of this project, which has been funded by the Hilton/Perkins Foundation. Dr. Gaylen Pugh was selected as Project Director, and has been very effective in keeping the writing of this document on track. I was privileged to be one of the writers.

I want to emphasize the potential impact of this publication. NASDSE membership is comprised of the special education leaders in each state. They have a tremendous influence on policy and practice regarding educational services for students in their respective states. More specifically, members of NASDSE have the capability of determining educational services for blind and visually impaired students. I also emphasize that we educators for blind and visually impaired students did not go to NASDSE to promote the writing of this publication. They came to us. I have to believe that the members of NASDSE recognize the need for new guidelines that will enable them to serve blind and visually impaired students more effectively.

What follows is a NASDSE news release announcing the new publication. It provides some detail about the content of "Blind and Visually Impaired Students: Educational Service Guidelines". If you do not receive a copy, please order one - you'll be glad you did.

It's Ready, It's Out There!

NASDE and Hilton/Perkins Publish the Blind Initiative Guidelines

In September, NASDSE and the Hilton/Perkins Program of the Perkins School for the Blind disseminated their educational service guidelines for students who are blind or visually impaired. The intention of this guidelines document is to provide assistance to state and local education agencies, service providers, and parents. The document describes essential program elements and features which must be considered when designing appropriate services for students who are blind or visually impaired, including those students with multiple disabilities. A full continuum of options is included.

The process for developing this guidelines document, as well as its format and design, was patterned after NASDSE's Deaf Initiative guidelines published in 1994. The Blind Initiative document is the collaborative effort of 13 national organizations that have special interest in the provision of services to visually impaired persons and their families. Representatives from the major national consumer, advocacy, and educational organizations comprised the writing team. A larger panel of content experts provided review and comment on draft chapters.

The document is organized into five chapters, a glossary, and extensive appendices. Chapter One presents the theoretical constructs on which the other chapters are based. It discusses what educators need to know about the unique educational needs of students with visual impairments. It outlines public policy and legislation that affect these students and their rights to full participant in the general school curriculum. In Chapter One and subsequent chapters, the role of parents as equal partners in the educational process is discussed.

Chapter Two presents the framework for services. It outlines the responsibilities of the state education agency to maintain a unit to ensure the policies, procedures, and personnel are in place to meet the unique educational requirements of students with visual impairment. The role of the state agency in providing adequate and timely resources and appropriate reading materials, along with a full array of placement options, is discussed.

Chapter Three describes the process of identifying and assessing individual needs. It addresses the issues of personnel administering assessments, the need for on-going assessment of student progress, the interaction of functional vision and additional disabilities, and appropriate learning and literacy media. This chapter reinforces the need for parent involvement and the responsibility of the educational system to include parents in meaningful ways throughout the process and decision making.

Chapter Four identifies concepts that must be addressed following assessment in reviewing program options and placement. Educators working collaboratively with parents and students develop programs in educational setting which meet the unique individual needs of each student who is blind or visually impaired. These options allow the students an expanded core curriculum and appropriate opportunities to participate with peers and mentors who are visually impaired, as well as with those who are sighted.

Chapter Five describes characteristics of personnel who will work with students who are blind or visually impaired, including those with multiple disabilities, in appropriate placements once they have been identified. This chapter discusses the specialized knowledge, skills, and attributes needed to provide educational and orientation and mobility services to students who are visually impaired. Proficiency of educational personnel in literacy and communication modes (including Braille reading and writing and use of optical devices) and specialized training of service providers in orientation and mobility, assistive devices and technology including Braille, speech, and low vision technology are also discussed.

The Glossary provides an in-depth look at some of the terminology used throughout the document. A user-friendly table of contents assists the reader in locating specific information as some issues overlap and are repeated in different contexts. The Appendices section will provide the reader with valuable resources and more extensive explanation of chapter content.

The document has been distributed to state directors of special education, organizations, and parent and consumer groups by the Hilton/Perkins Foundation. Individuals seeking additional copies should contact the Hilton/Perkins Foundation, Perkins School for the Blind, Watertown, MA. For further information on the project, contact Dr. Gaylen Pugh, Project Director, National Association of State Directors of Special Education, (256) 772-4350 or via e-mail at .

Editor's note: There are several new books out that parents and even professionals may want to purchase related to IEPs and IDEA. These books were review in the 1999 Library Summer Selection (a special supplement to Exceptional Parent magazine). We thought you might enjoy learning about these publications.

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Go to Fall 1998 Table of Contents.
Versión Español de este artículo (Spanish Version)

New Landmark Harris Survey Shows Little Improvement (Press Release)

Editor's Note: A recent Louis Harris poll of people with disabilities of all kinds found they continue to lag in employment, educational levels, and indicators of quality of life. Working age adults with disabilities are no more likely to be employed now than 10 years ago. Nationally, blind consumers are even less likely to be employed. In Texas, however, statistics from Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) indicate that legally blind working age adults have a far higher rate of employment than the national average.

WASHINGTON, D.C., July 23, 1998 - Americans with disabilities still face gaps in securing jobs, education, accessible public transportation and in many areas of daily life including recreation and worship. Those findings were presented in a new U.S. survey of 1,000 adults with disabilities announced today at a Washington, D.C. news conference by the National Organization on Disability (N.O.D.).

For disability advocates, these findings are disturbing yet motivating for public and private decision-makers. The findings, commissioned by N.O.D in cooperation with Louis Harris & Associates, define the current status of persons with disabilities in American life.

The highlights of the 1998 N.O.D./Harris Survey of Americans with Disabilities released today queried adults with disabilities, early this year (with a sampling error of plus or minus 4 percentage points). This survey is the first such national poll taken by Harris in cooperation with N.O.D. since 1994, and the third conducted by Harris since 1986.

Among the most startling findings about the workforce, the research exposed significant gaps between the employment rates of the working disabled versus the working non-disabled. Only 29% of disabled persons of working age (18-64) work full or part-time, compared to 79% of the non-disabled population, a gap of 50 percentage points. Of those with disabilities of working age who are not working, 72% say that they would prefer to work.

Fully a third (34%) of adults with disabilities live in households with total income of $15,000 or less, compared to only 12% of those without disabilities.

Approximately one in five (20%) of adults with disabilities have not completed high school compared to 9% of adults with no disabilities.

Alan A. Reich, President of N.O.D. stated, "These gaps are unconscionable. America must do better!" He added, "At a time when the U.S. unemployment rate is at an historic low and there is a crying need for workers, it is astounding to learn that the employment gap remains so wide. As the survey shows, over 72% of people with disabilities out of the workforce want to work and contribute to the economy. America must remove attitudinal and physical barriers in the workplace and in all other areas of life."

Humphrey Taylor, Chairman of Louis Harris & Associates, commented, "The purpose of this research is not just to measure the gaps in key life areas between people with and without disabilities, but to provide information to help close them. I anticipate that the results will be used by people both inside and outside the disability community, with the media, with corporate America, legislators and state and federal administrators."

This survey is rich with information stemming from the answers to 145 questions on life activities considered most important to people with disabilities. Other findings include:

  • " Only one-third (33%) of adults with disabilities are very satisfied with life in general, compared to 61% of the non-disabled population.
  • " Only seven out of ten (69%) adults with disabilities socialize with close friends, relatives or neighbors at least once a week, compared to more than eight out of ten (84%) among the non-disabled, a gap of 15 percentage points.
  • " About a third (33%) of adults with disabilities go to a restaurant at least once a week, compared to six out of ten (60%) of those without disabilities, a gap of 27 percentage points.
  • " Inadequate transportation is identified as a problem by 30% of adults with disabilities. However, only 17% of non-disabled adults consider daily transportation a problem in any way, representing a gap of 13 percentage points.

What can Americans do to close these participation gaps? According to Reich, "A lot. Each of us can help eliminate the gaps in participation by finally focusing on the abilities not disabilities of every American."

Employment

Employers - in business, government, public agencies, community institutions and groups - all can examine their practices and develop strategies for seeking out and hiring people with disabilities. Businesses must and can implement Americans with Disabilities Act requirements for accommodations in the workplace for people with disabilities, and at reasonable cost. Recent business studies show, it requires on average less than $300 to accommodate a worker with a disability. Home based employment and other forms of workplace flexibility are beneficial to many workers, including the disabled. From working parents to people with disabilities, many people are taking advantage of technology advances that allow them to telecommute and still play an active role in filling the nation's growing job vacancies. Disability awareness and accessibility is good business. Consumers prefer to deal with businesses that address their needs. The 54 million Americans with disabilities are a prime consumer market actively courted by companies who can meet their needs. Use an untapped pool of talent. People with disabilities can contribute innovative and resourceful thinking to the collective knowledge of their workplaces and communities, because they face unique external challenges as they negotiate the physical world around them, as well an internal challenges to their identity as individuals and as members of society.

Communities

Community groups, religious organizations, professional and trade organizations, labor unions and service organizations can examine their practices and adopt plans for including disabled persons. Elected local leaders and officials can ensure that their communities are in full compliance with the law - the Americans with Disabilities Act, the Rehabilitation Act, the Motor Voter Law, and the Individuals with Disabilities Education Act. Recreational, cultural and sports groups and institutions should ensure full accessibility and encourage participation of disabled persons. The recent debate about Casey Martin's participation in the PGA tours highlights the bias people with disabilities face in America today. Recognize people with disabilities as positive contributors to community diversity. People with disabilities, the nation's largest minority, often are not included as a group in corporate and community planning, although they impact diversity at least as much as other minority groups. Moreover the disability population is highly diverse within itself, and, unlike other minority groups anyone can join in an instant.

Individuals

Those of us with disabilities, family members and friends can take the lead by providing guidance to others in encouraging full participation of people with disabilities in community life. Active involvement by people with disabilities in educational and civic life on all levels expands our awareness of how those outside the mainstream live; this allows our communities to be more thoughtfully inclusive of all differences. Americans must extend themselves to their fellow citizens with disabilities, and overcome their fears of the unknown. We need to become more aware of what people with disabilities can contribute; we need to respect their abilities.

Across the Nation

The media can ensure that people with disabilities are portrayed fairly as individuals engaging in public and private life. Negative portrayals of people with disabilities in movies, such as the recent "There's Something About Mary", TV shows and so on, are inaccurate and should not be permitted.

As more people with disabilities participate in the various aspects of American life, the general population will become more informed, and they will abandon their stereotypes based on misconceptions. Attitudes will improve. The full participation of people with disabilities in an increasingly diverse American population overall will result. Just because we have enacted the ADA does not mean that we can rely on it to change attitudes and perceptions about America's disabled. By valuing each individual for his or her abilities allows our nation to benefit globally by demonstrating democracy at its best.

The National Organization on Disability promotes the full and equal participation of America's 54 million men, women and children with disabilities in all aspects of life. Founded in 1982, N.O.D. is the only national network organization concerned with all disabilities, all age groups and all disability issues. N.O.D. receives no government funds and is supported entirely by private donations from individuals, corporations and foundations. For more information, contact N.O.D. at (202) 293-5960, TDD (202) 293-5968.

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Go to Summer 1998 Table of Contents.
Versión Español de este artículo (Spanish Version)

by Jean Robinson, Family Support Coordinator, TSBVI VI Outreach with help from Cyral Miller & Mary Ann Siller

In the Winter 1998 edition of SEE/HEAR we included an article about the National Agenda, a national movement to establish eight goals as standards for programs serving children and youths with visual impairments, including those with multiple disabilities. These goals have been ratified by many local, regional, and national organizations and now, across the country, there are groups designing action plans to meet state needs. In each edition of the newsletter during the coming school year we plan to highlight some of the creative strategies being used to meet these goals at a local or regional level. We would like to invite you to share your successes with us so we can let others know what works!

Let's take a look at some of the innovative approaches to addressing Goal 1.

Goal 1

Students and their families will be referred to an appropriate educational program within 30 days of identification of a suspected visual impairment.

  • This goal has become a public relations issue, as all the strategies center around advertising and marketing vision services. Some areas of the state have printed brochures listing the local agencies serving the visually impaired.
  • Achieving this goal involves meeting and informing the medical community, including public health screeners, family doctors, pediatricians, and ophthalmologists of the services available for children with visual impairments. Personal contact to explain the referral process and the state eye report has been effective.
  • Some districts host luncheons or seminars for local eye specialists to get to know them and talk about family and educational services their patients may find beneficial.
  • One school district invited the state Early Childhood Intervention (ECI) staff to provide an inservice to both local ECI and general education staff hoping to increase referrals of children for vision services before entering Preschool Programs for Children with Disabilities (PPCD). The transition from ECI to PPCD can be facilitated if information is shared regularly and routinely.
  • Most vision teachers around the state are providing a routine inservice to general educators.
  • Communication and cooperation between the different entities (medical staff, schools, special education co-ops, and preschools) is critical to achieving this goal. Some vision teachers volunteer to speak to their area civic clubs, such as Lion's, Rotary, etc.

Addressing the eight goals of the National Agenda at the local level gives focus and structure to regional planning. We have gone to several gatherings of VI personnel to encourage regional and local action. (It would be exciting to include parents and related agencies in these discussions, too.) When time was set aside for brainstorming these goals, ideas and strategies poured out. It gave staff the opportunity to customize these goals to their area and take ownership of the outcomes. The enthusiasm is contagious, which is a morale boost for everyone. The "to do" list is never-ending and vision teachers cannot do it alone. It is important to forge creative partnerships with parents, community agencies, and civic groups and get them on the National Agenda bandwagon. We would be happy to help your area brainstorm fabulous National Agenda plans. So in the future when you hear "Why a National Agenda?" answer "It takes a village..."

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Spring 1998 Table of Contents
Versión Español de este artículo (Spanish Version)

by Jean Robinson, VI Family Support Coordinator

The Josephine L. Taylor Institute took place just recently in Washington, D.C. The American Foundation for the Blind joined with the American Council of the Blind to provide this forum for education and rehabilitation professionals and parents to share common concerns, increase awareness of needs, and develop innovative strategies for positive changes. I was fortunate to attend this annual gathering in the company of two parents, Lars Anderson, NAPVI Representative for Region 5 (which includes Texas) and Geri Engle, the newly appointed Parent State Co-Coordinator for National Agenda in Texas. They, along with other consumers and professionals, had the "hands on" experience of visiting their legislators at Capitol Hill to share their issues concerning the education of children with visual impairments and the accessibility of services. Both of these parents, in order to fulfill their roles as your representatives, would like to hear from parents, so please contact them:

  • Lars Anderson
    2110 Holly Hill Ln., Carollton, TX 75007-2318
    Home - (972) 4246, Work - (972) 952-4958
    Email <>
  • Geri Engle
    P.O. Box 800541, Houston, TX 77280-0541,
    Home - (713) 464-1755

The conference theme of mobilizing specialized services through consumer-provider partnerships supports the goals of the National Agenda (see SEE/HEAR, Winter 1998 edition). AFB distributed an advance copy of "A Report to the Nation" which summarizes the current status of the National Agenda. This document consists of national data reports on each of the eight goals and state activity reports including surveys on class/caseload size, timeliness of referrals, and access to appropriate materials across the nation. It is interesting to find out what's going on in other states and compare to your own experience. The influence of parent/professional/consumer partnerships on policymakers and the general public is vital to the advancement of the priority goals of the National Agenda. A copy will be available from AFB Press (1-800-232-3044). Strategies to accomplish the goals of the National Agenda at local school-district levels are being developed and will be published in "A Call to Action." A session highlighting the National Agenda activities in Texas will be presented at the TAER conference and may be coming soon to the Educational Service Center near you.

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por: Jerry Wells, Director de Información Pública
Comisión de Ciegos del Estado de Texas

Con todas las actividades de fin del año escolar, las preparaciones para el Verano y la ocupación de seguirle la pista a todas las actividades estatales y federales, ha sido difícil encontrar tiempo para los grandes eventos que se aproximan. ¿Sabían que la Comisión de Ciegos del Estado de Texas y otras agencias de salud y servicios humanos pasarán a revisión durante la próxima asamblea legislativa? ¿Sabían que los padres y los profesionales que trabajan con niños incapacitados pueden tomar un papel importante en este proceso? Si estas preguntas lo pusieron a pensar continúe leyendo.

¿QUE ES SUNSET (La Puesta del Sol)?

Sunset es el proceso de revisión por el que periódicamente pasan las agencias, mesas directivas y comisiones estatales. Este proceso fue propuesto en 1974 y convertido en ley en 1977. El propósito de este proceso de ley es determinar si las agencias todavía tienen una razón suficientemente especial que merezca que la agencia continúe operando. Si al final de la revisión la agencia no llena los requisitos de las personas que viven en Texas, el "sol se pone" y la agencia termina de existir - por eso el nombre de este proceso es La Puesta del Sol.

¿CUANDO REVISAN A LAS AGENCIAS?

La mayoría de las agencias están programadas para pasar revisión cada 12 años. En 1999, 25 agencias pasarán por este proceso. Entre estas se encuentran las siguientes agencias:

  • Texas Department on Aging

  • Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind)

  • Texas Cancer Council

  • Interagency Council on Early Childhood Intervention

  • Children’s Trust Fund of Texas Council

  • Texas Commission for the Deaf and Hard of Hearing

  • Office for the Prevention of Developmental Disabilities

  • Texas Planning Council for Developmental Disabilities

  • Texas Health and Human Services Commission

  • Texas Board and Department of Health

  • Texas Department of Human Services

  • Texas Department of Mental Health and Mental Retardation

  • Governor’s Commiteee on People with Disabilities

  • Texas Rehabilitation Commission

  • Center for Rural Health Initiatives

¿QUIEN CONTROLA EL PROCESO?

El proceso de revisión Sunset está bajo la dirección de la Comisión Consejera Sunset. Esta comisión está compuesta de oficiales que han sido elegidos e incluye a dos miembros del sector público. Usted puede pedir una lista de los miembros, sus direcciones y las regiones del estado que ellos representan si llama gratis a la Comisión Sunset al 1 (800) 735-2989. También puede pedir esta información a cualquier oficina de TCB o a la Oficina de Información Pública de TCB, en braille, letra grande o letra de imprenta regular.

¿EN QUE CONSISTE EL PROCESO DE REVISION SUNSET?

Para formular sus recomendaciones, el personal de Sunset recaba información de muchos lugares. Cada agencia somete un Reporte de Auto Evaluación (SER). El SER de la agencia identifica los problemas, las oportunidades y los asuntos que la agencia considera que deben ser tomados en consideración en la revisión de Sunset. Después, la agencia envía a Sunset un resumen de sus actividades y programas. Después de la revisión, la Comisión Consejera de Sunset enviará cartas a los grupos e individuos interesados para solicitar comentarios. Se hacen visitas a las oficinas de algunas agencias seleccionadas, proveedores de servicios, contratistas, grupos de consumidores y otros alrededor del estado que tienen interés en la agencia. Una vez que la etapa de evaluación de la agencia se termina, Sunset publica un reporte conteniendo las recomendaciones de su personal. El reporte del personal es presentado después a la Comisión Consejera de Sunset durante una de sus audiencias públicas. Esto permite que el público participe haciendo comentarios o sugerencias y la Comisión Sunset comienza a considerar los cambios potenciales correspondientes a las ley Sunset que recomendará a la Legislatura.

¿EN DONDE PUEDO OBTENER MAS INFORMACION SOBRE EL PROCESO SUNSET?

Usted puede comunicarse con la Comisión Consejera Sunset Texas llamando por teléfono al 1 (800) 735-2989 o por medio del sitio Internet < www.sunset.state.tx.us >. También puede llamar gratis a TCB al 1 (800) 252-5204 o enviar un e-mail a la Oficina de Información Pública de TCB al .

¿COMO PUEDO ENTERARME CUALES ASUNTOS SON LOS MAS IMPORTANTES PARA UNA AGENCIA ESPECIFICA?

La mayoría de las agencias ofrecen publicaciones. Por ejemplo, TCB ofrece un documento llamado "TCB Issues", el cual está a su disposición en las oficinas locales de TCB, o puede solicitar una copia a los teléfonos arriba mencionados. También puede llamar a las organizaciones tales como Alliance of and for Visually Impaired Texans (AVIT) y a Deaf-Blind Multihandicapped Association of Texas (DBMAT). El teléfono de AVIT es el 1 (800) 394-0666 y el teléfono de DBMAT ES EL (972) 287-1904.

¿COMO PUEDO AYUDAR?

Llame a un miembro de la Comisión Sunset, especialmente a uno que represente la región en donde usted vive. Usted puede examinar los documentos de Sunset. Estos documentos están a disposición del público para mantenerlo informado sobre el proceso de revisión. El personal de Sunset solicita sugerencias durante el proceso de revisión; esa es una oportunidad para que las personas y organizaciones interesadas eleven su voz y comuniquen sus preocupaciones sobre cualquier agencia. La Comisión Sunset ofrece audiencias públicas para cada agencia que está revisando, esto ofrece la oportunidad para que el público testifique y provea recomendaciones. Generalmente, si se le va a permitir a una agencia que continúe operando, la Legislatura debe pasar una propuesta de ley. El público puede participar de la misma manera en cualquier otra propuesta de ley.

Muchos de los asuntos que se toman en consideración durante la revisión Sunset pueden afectar directamente los servicios para los niños incapacitados. Si usted siente preocupación de que el "sol se ponga" en un programa o actividad con la que su hijo se beneficia, no manténgase informado y en el resplandor.

from Fall 97 issue
by Mel Dugosh, Parent, Pipe Creek, Texas

In 1995 I attended a conference sponsored by C.A.M.P., Children's Association for Maximum Potential, and moderated by the editor of Exceptional Parents Magazine. The conference objective was to improve relationships between parents of children with significant disabilities and medical and educational professionals. After ten years of parenting one child, I admit that I had become very cynical that those relationships could do anything but worsen.

The workshop was dry and predictable with the professionals extolling their expertise and the parents participating little. Suddenly a male parent stood and said, "Hey, lets talk about what's really bothering me ... we can't even go to church as a family anymore ... our child isn't welcome there. When we find a church that wants all of us ... this is where we are going to go."

The meeting went haywire, with the parents all speaking at once ... out loud and amongst themselves, each of them sharing a story of exclusion at the hands of a church. I said nothing; this hardened parent had dissolved in tears, silently grieving the church I had lost. The church that had asked us to stand in the lobby during a song because our son was disruptive. The church that was not able to provide child care in the nursery because of his special needs. The church I took my son to for healing, and they "cast the devil out of him." This huge famous church that showcased its deaf ministry and occasionally proudly handed over its pulpit to an evangelist with cerebral palsy, had no room for our tiny lovable son, Chris, who was born with blindness and deafness but sees and feels what most of us cannot. Our son Chris, who without hands somehow manages to touch us with warmth each day.

It had been the ultimate rejection. The rejection that I had not allowed myself to even think about and it suddenly seemed that it was not that uncommon. For months after the meeting I wondered about other parents and their church experiences. Eventually, with the help of C.A.M.P. and their agency's commitment to the many aspects of the physical and psychological needs of both the child with disabilities and their entire family unit, I launched a very unscientific qualitative survey to discover if in fact other families with children like mine were finding a policy of exclusion in their community churches.

First Responses

The research indicates that when a child with significant disabilities is born into a family their first initial contacts for assistance are within their immediate family, the medical community, and their church community. These crucial "first responses" to what the family may perceive as a crisis situation, seem to set the tone for their interactions with government and community resources that will follow.

The historical legacy of placing persons with significant physical and mental disabilities in institutions or segregated in their homes may be a contributing factor to the hostile atmosphere that some of the survey respondants found. They initially sought comfort and guidance in their local church community and were met with blame, accusation and rejection.

Pressure for Compliance

In several denominations, instances were reported where new families having a child with physical disabilities and/or mental disabilities with no previous advocacy training or experience with community inclusion heard doctrines of "retribution" and felt pressure to "repent" and "seek a healing" for their child. A parent responded, "I somehow felt that I must apologize to the congregation because my child with mental disabilities and an ongoing chronic illness, did not have a complete recovery, or even close, as if my faith wasn't strong enough to receive a healing from God for my child."

Results reported from these types of incidences yielded - emotional distress, anger at God, withdrawal from church and community, and reluctance to discuss these happenings.

Denial

It is not uncommon for parents dealing with difficult circumstances to keep their thoughts and emotional pain to themselves. Not saying anything or saying very little protects them against vulnerability. A parent remembers, "My son's Down Syndrome was not obvious in his appearance for the first few months after his birth. Our church was so large that many people did not know that my husband and I were dealing with the initial pain and shock of the news ourselves. The problem was that I wanted to continue keeping his Down Syndrome a secret. I wanted everyone to think of me as a happy and fulfilled new Mom and not feel sorry for me. While I continued this `happy face,' inside I felt as though I was surrounded by a huge dark cloud of despair and it was many months before I was even ready to face the reality, or even admit to anyone that there was a problem."

Parents that are not openly expressive and are not exhibiting sadness in more obvious situations can also be perceived by those in the church community as having already successfully dealt with their circumstances. A parent expressed his thoughts in this way: "I was alone those first few days after our child with disabilities was born. Friends and relatives came to visit my wife in the hospital, they hugged, talked to her and cried with her. Our pastor and his wife came and spoke to my wife; but he did not speak to me."

Grief Process

People may have difficulty getting through the stages of grief because they are not aware of the nature of those stages. These natural stages may contribute to the church communities' inability to assess the situation and provide assistance. "After caring for my child with disabilities alone for many years I know that I need God's strength to continue. I also know that I need the help of our entire congregation. How do I tell them now, that I alone, am not equipped."

Anger

Vague and undefined anger is common. Parents may become easily upset and frustrated and have no focus for their anger. These feelings of isolation and anger can be devastating. One parent described her feelings as, "...intense humiliation, guilt, condemnation, hopelessness, confusion, fear, lack of purpose for living, deep depression and despair, distrust for those in the medical profession, abandonment, and betrayal by God."

Many people were not aware of how their beliefs about God could relate to the birth of their child with mental and physical disabilities. Struggling with an unshakable image of God from their own past while coping with an overwhelming situation can be especially difficult. Parents dealing with these intense emotional issues need a safe and secure environment within their church community to explore their anger and other emotions, especially the anger directed specifically at God.

Acceptance

When a family reaches the point in the grieving process, in which they are able to accept their circumstances, they begin a tentative move in a positive direction. When the family no longer sees their child's physical or mental limitations as a source of shame or as something they must overcome and can accept that it is okay to be a person with disabilities, this is the beginning of advocacy efforts on behalf of their child and other children with disabilities for inclusion in all aspects of community life. A parent explains, "Our family is currently looking around, again, for a church. It is so difficult for us to find one where we feel that we belong. Sometimes I go scope them out by myself on Sunday, just to see if the church has others with disabilities and how they treat them. I am no longer willing to allow my child to be hurt by an uneducated church."

Advocacy Efforts

Once a parent of a child with physical or mental disability becomes empowered to advocate for their child within their church community, humanity cries out for a new vision. Inclusion spreads throughout the community as a whole as shown in this example from a parent: "At one time we wondered how our new baby daughter would suffer from having a brother who, because of his disability, would restrict her life and embarrass her in front of her friends. Those nightmares of the past will never come true! I now speak to other parents, professionals, Chamber of Commerce, school boards, churches, organizations and public officials. I'm no longer ashamed, I have knowledge and confidence and I plan to continue my work in advocation for my son and others with disabilities."

Accessibility

If barriers of attitude, communication or architecture exist for anyone, the foundation of the House of God is weakened for all. Inclusion in the church community will become a reality when parents of children with disabilities and adults with disabilities determine that they deserve the opportunities to achieve whatever is possible despite the difficulties. "The church needs to provide the parishioners guidance on how to `include' children with disabilities with their dignity intact, in the church, as well as the community."

Americans with disabilities have the right to attend the church, synagogue, meetinghouse, mosque, or temple of their choice. However, this may mean negotiating stairs or narrow doorways, print media that is too small to read, inadequate sound systems, and bathrooms that are not accessible.

The Americans with Disabilities Act (ADA) was signed into law on July 26, 1990. This sweeping civil rights law provided a national mandate for the elimination of discrimination against individuals with disabilities in employment, state and local government services, public transportation, public accommodations, and telecommunications. A religious entity, however, is defined under the ADA as a "religious corporation, association, educational institution, or society." Using this interpretation, church congregations, camps, church offices, and other church facilities fall within this ADA definition.

Religious organizations or entities, including places of worship, are exempt for any Title III public accommodation requirements of the ADA. Even when a religious entity carries out activities that would otherwise make it a public accommodation (for example, a restaurant, a place of lodging, a theater, a library) the religious entity is entitled with the exemption from the ADA coverage. If a church entity operates a public nursing home, day school, child care facility, and summer camp, those operations, again, are not subject to the ADA's public accommodation requirements. This also applies to religious institutions led by lay boards. The test is whether the religious entity controls the public accommodation, not who receives the services. However, a church facility operating as a profit-making, noncharitable institution does not qualify for the religious exemption.

A church can provide a daycare and avoid these issues by choosing to lease the space to a nonreligious organization that will operate the public accommodation. The tenant them becomes responsible for compliance with the ADA, not the church leasing the facility.

If a church service organization operates with assistance of federal money, the shelter will be required to be accessible to people with disabilities under section 504 of the Rehabilitation Act of 1973. Section 504 prohibits discrimination against persons with disabilities by entities receiving federal financial assistance.

The First Amendment provides, "Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof..." The Supreme Court has interpreted these words to mean that government entities - federal, state and local - must avoid activities which advance or inhibit religion. Under the Supreme Court's Lemon test, named for the case in which it was adopted [Lemon v. Kurtzman, 403 U.S.602(1971)], the federal government may fund a religiously-affiliated program that 1) has a secular or civic purpose; 2) has a principle or primary effect that neither advances nor inhibits religion; and 3) avoids fostering an excessive government entanglement with religion. The broad latitude afforded by the Lemon test for federal funding of churches' nonsectarian social programs can allow for federal support for religiously affiliated programs in the areas of housing, child care, nutrition, health, inclusion, drug intervention and assistance for the poor.

Adults with Disabilities

An adult with mental disabilities expresses herself in this way: "Not only do people with physical disabilities get shunned, but people with [other] disabilities do as well. Many `Mega Churches' define your personal success by the job you hold or the social circles you fit into. Churches make a glaring and condescending spectacle of people who think differently than they. Many times it is assumed that we are stupid and are seldom called upon to fulfill meaningful roles in church life."

"In Austin, Texas, my former `mega church', was called upon to bake cookies for a Christmas party at the Austin State Hospital. They flatly refused. This church is approximately two blocks from the hospital and has had no known ministry to a `community' that were truly its `neighbors'. The good news is that the church recently issued an apology. They have become interested in the folks over at the hospital and have begun to minister to them and welcome them into the congregation."

Many parents of children with disabilities report that they converted to different denominations or left churches with policies of exclusion to join churches with visible adult congregants with disabilities that had already begun paving the way to inclusion in that church community.

Diversity

A parent with a child with mental disabilities describes his new church in this way, "Our church is represented by extremely diverse personalities and backgrounds. Yet we are united into a close knit group because of God's gifts of help and hospitalities. God has blessed our congregation with many that need special accommodations and He has given us the tenderness to understand and provide for these needs."

Looking past impairment to discover the unique gifts and potential of those who live with mental and physical disabilities is a celebration of life. This celebration, rather than the segregation of diversities, allows for the threads of interaction to become reinforced into the fabric that holds the church community together. Repeating and patterning these actions can serve as an example to the surrounding communities' increased awareness and acceptance of community inclusion.

The Full Circle

In many communities the church is among the few viable indigenous social organizations committed to fostering the development of individuals, families and the community as a whole. There are, in fact, church leaders with or without disabilities, who are creating new inclusive church communities across America. Some have taken forthright measures and thoughtfully improved their buildings and programs. In so doing, many people have come to recognize the gifts which persons with mental and physical disabilities bring into the church community. A parent describes the programs in her church community, "Our church now has a Ministry for Special Needs with a council for fourteen people. We have a director of programs which coordinates the Sunday School programs. There are two special classes for children and one for adults. As well as mainstreaming for those higher functioning individuals. There is an interpreter for individuals who are deaf at worship and in Sunday School. We have plans for programming during family night activities on Wednesday evening during the school year, and our future goals include respite services."

"We also have an outreach for residents of several group homes and institutions in the area. We have coordinated transportation with congregants who live nearby. We recently contracted with a nonprofit agency to provide after-school care for children with special needs of elementary school age, and are hoping that some of these children will bring their families and become a part of our growing ministry."

As social injustices, ignorance and apathy are replaced with increased sensitivity and warm acceptance, the church community will begin to fully appreciate the contributions that persons with mental and physical disabilities present. In addition, their virtues of courage, patience, perseverance, and compassion can serve as an inspiration to all those in the community.

Resources

National Organization on Disability
Religion and Disability Program
910 16th Street, N.W.
Washington, DC 20096
(202) 293-5960 - voice and (202) 293-5968 -TTY

National Catholic Office for Persons with Disability
P. O. Box 29113
Washington, DC 20017
(202) 529-2933 - voice/TTY

Union of American Hebrew Congregations
Liheyot Advisory Committee
838 5th Avenue
New York, NY 10021-7064
(212) 650-4075 - voice

Editor's Note: You may contact Mel at (210) 510-4495 or write to Rt. 1, Box 1416, Pipe Creek, TX 78063.

from Sumer 1997 issue

Speaking of legislators and legislation, I have recently discovered a great website to get information about the actions of the State Senate and House of Representatives. The site is called Texas Legislature Online and the address is http://www.legis.state.tx.us/ There is also a website for the National Legislature called Thomas Legislative Information on the Internet and its address is http://thomas.loc.gov/home/thomas.html?62,15

by Robbie Blaha, Education Specialist and Kate Moss, Family Training Specialist - Texas Deaf-Blind Outreach

Students with deaf-blindness frequently require modifications regarding the delivery of instructional services. Without appropriate modifications, the child with deaf-blindness may be unable to access information from the instructional environment. These modifications are generated through the assessment process and are reflected in the reports submitted to the ARD committee. In a number of school districts around the state, the modification sheet is being used to summarize and document some of these specific modifications. We have developed a modification sheet which lists typical modifications for the student with deaf-blindness. We will be sharing this information with school sites around the state during the next year. We hope to get feedback on the effectiveness of its design and its value in facilitating better information about the student's need for the staff working with him/her.

The design of this form is based on the sample modification form developed by Texas Education Agency. Listing information on a single form serves a number of purposes:

  • It compiles and highlights sensory modifications that have been recommended in a variety of reports (e.g. the functional vision evaluation, the audiological, the technology assessment, the communication assessment, and the learning medium assessment). This is especially critical when various recommendations impact each other. For example, the speech pathologist recommends the child see the speaker's face to support speechreading, but the vision report indicates the child can not distinguish facial features at a distance greater than 12 inches.
  • It presents modifications for deaf-blindness which are not typically considered in other reports (e.g. tactile signing).
  • It helps eliminate the recurring problem of "I thought it was somewhere in the ARD notes" or "Since we did that last year, I just assumed they would continue it."

Many of the modifications we have included on the sheet are unique to deaf-blindness. Some of the modifications may be unfamiliar to staff who are not trained in the area of deaf-blindness. Modifications for students with deaf-blindness are not typically covered in preservice programs which train teachers of the visually impaired or teachers of the deaf or hard of hearing. The need for particular modifications is based upon a number of factors which include etiology, age of onset of the disabilities, degree and type of vision and hearing impairments, the presence of other disabling conditions, and most importantly the combined effects of the vision and hearing loss.

The modification sheet proposed by TEA has five sections and list specific modifications. The five sections included are: alter assignments, adapt instruction, adapt materials, manage behavior, and required equipment/assistive technology. Although many of the modifications listed might be needed for a student with deaf-blindness, many typical modifications for this population are not listed. Using these headings, we have included a list of modifications common to deaf-blindness. A sample form will be available soon. The information that follows gives more information about each of these modifications and why they might be needed.

Section 1 - ALTER ASSIGNMENTS

This first section of our form remains the same as the TEA form and does not require explanation. The modifications included under this section include:

  • Reduced assignments
  • Taped assignments
  • Extra time for completing assignments
  • Opportunity to respond orally
  • Emphasis on major points
  • Task analysis of assignments
  • Special projects in lieu of assignments

These modifications may be necessary modifications for some students with deaf-blindness.

Section 2 - ADAPT INSTRUCTION

Providing a high degree of consistency in presenting new information. A child with deaf-blindness receives fragments of any experience because their eyes and ears omit or distort incoming information. When presenting new information staff must provide information in a consistent way so that the child can more readily grasp the information being taught. For example, when learning new signs tactually or through coactive signing, some children are confused by the variation in the way three different staff members form the same sign. The child may take longer to learn the sign or be unable to learn signs at all because of this variation. The number of people using new vocabulary with the child needs to be limited at first to insure a greater degree of consistency.

Providing experience-based instruction to supplement or introduce group instruction. Children with deaf-blindness have difficulty learning through observation or independent exploration. This results in an experiential and conceptual base that differs significantly from children with any other disability (ies). They must be given the opportunity to recoup information which has been consistently denied to them by their sensory losses. Current thought suggests that this type of educational approach is beneficial to all learners. However, for the child with deaf-blindness this may be the only approach that proves effective.

Providing additional time to locate & attend to referent. Because of their hearing loss a child with deaf-blindness may have difficulty localizing sounds, identifying speakers, etc. The same child's visual impairment creates difficulty when focusing with a change in distance, lighting, or background. If his visual fields are constricted or broken, locating something visually becomes much more complicated. The child with deaf-blindness must have extra time to shift his gaze from the teacher who asks the questions to the student who responds. In other instances, the student may need to have additional time to locate the object or situation under discussion so they can understand the comments.

Providing frequent comprehension checks. You cannot assume the child with deaf-blindness is getting the information at the same rate and in the same manner as the other students. It is critical to check frequently during instruction for comprehension.

Providing one-on-one instructional support. Some children with deaf-blindness have a current need for one-on-one support for all or part of the day in order to benefit from instruction. This may be necessary because the child's vision or hearing limits his ability to access the learning environment independently. This need may exist in one situation, but not in others. For example, some children with deaf-blindness only need one-on-one support in group situations to be able to keep track of the discussion or demonstration, to participate in a hands-on experience, or to interact with their peers. Depending on the child and the activity, a one-to-one ratio can be provided by a variety of people (e.g., peer, teacher of the visually impaired, the third-grade teacher).

Providing intervenor aide. An intervenor is an instructional aide who has specific training in deaf-blindness. Her training would include the information needed to implement the IEP objectives and individual modifications for a child with deaf-blindness. Intervenors are specifically designated to work with a child with deaf-blindness for all or part of the instructional day based on the current need of the child.

Providing an interpreter and/or modifying interpreting services: individual, small group, platform, visual description, and/or oral interpretation. Depending on the degree and type of visual and hearing impairment, the specific situation, and the communication form used by the child, different types of interpreting services may be required. For example, a student with slightly restricted fields and good acuities may be able to use a platform interpreter, or he may require small group interpretation. A child with severely restricted fields and 20/200 vision may need individual interpreting services, visual descriptions, and in some situations sighted guide assistance. A child who relies on speechreading may require the support of an oral interpreter. It is important to consider the type of interpreter support needed to accommodate the child's visual abilities and communication form.

Providing interpreter-tutor aide. An interpreter-tutor differs from an interpreter in that they not only provide direct interpretation, but also provides additional explanation and instruction when it is needed. Some students with needs in developing language, vocabulary and concepts may require this type of support.

Adapting manual communication form by: substituting fingerspelling or alternative signs, tactual signs, (hand) tracking, or coactive signing. There are a variety of manual communication forms used by students with deaf-blindness. Adaptations to these communicative forms are based on the child's cognitive, motoric and visual abilities. Some of these adaptations are specific to deaf-blindness:

  • tactual signs allows the person with deaf-blindness to receive information by placing his/her hands on the signer in order to read signs and fingerspelling by touch.
  • (hand)tracking occurs when the person with deaf-blindness places his/her hand(s) on the wrist area of the signer. This helps him direct his gaze and may provide additional information about a specific sign.
  • coactive signing occurs when the teacher takes the student's hand(s) and helps the student form the sign correctly.

Presenting signs and fingerspelling in appropriate field as noted in functional vision evaluation. Many children have visual impairments which may cause some type of field loss. It is critical to present visual information to them in a location where they can see it most readily. Some signs may need to be adapted to a smaller sign space. This technique could be used in conjunction with the adaptations to manual forms mentioned above. The functional vision evaluation should note any field losses that the child is experiencing.

Altering signing distance as noted in functional vision evaluation. When a child has an acuity problem or a field loss, signing distance is affected. Some children may require signs to be presented within 12 inches of their face to be able to see them. Other children who have restricted field loss with no acuity problems may occasionally need to have the signer at a greater distance from them than may be typical in some situations in order to get the hand and body movements inside of their field of vision.

Varying rate of signing and fingerspelling when presenting complex or novel information. Visual impairments may cause problems in receptive communication, especially if the information is new to the child. The child may not be able to keep up with the rate of signing or fingerspelling used for other students in their class.

Providing specific visual adaptations to instructional environment. The functional vision evaluation, the eye exam, the clinical low vision assessment and the learning media assessment contain pertinent recommendations which should be highlighted on the modification sheet. These might include such things as: allowing child to use eccentric viewing positions, providing additional lighting, etc. (Some recommendations may also be reflected in Section 3 - Adapt Materials and Section 5 - Required Equipment/Assistive Technology.)

Providing specific auditory adaptations to instructional environment. The audiological, the communication assessment, and in some instances the technology evaluations may contain specific recommendations for adaptations and equipment needed by the child. These might include: assistive listening devices, preferential seating placement, reduction of ambient noise, notetaker, etc. (Some recommendations may also be reflected in Section 5 - Required Equipment/Assistive Technology.)

Adapting braille instruction to match child's English language skills. Some children with deaf-blindness are fluent in American Sign Language, which is a different language from English. Since braille instruction is based on materials that are in English, the staff need to be sure that the vocabulary and language which are used in instructing braille are appropriate for the student.

Section 3 - ADAPT MATERIALS

The sensory assessments suggest specific modifications to materials. Some examples are: enhance contrast, provide specific print size, use toys that produce low frequency sound, etc.

Section 4 - MANAGE BEHAVIOR

Providing supervision regarding the use & maintenance of assistive listening devices and optical aids. A common complaint from parents and teachers alike is that children with deaf-blindness are not using hearing aids and glasses that are recommended for them. Since these devices allow the child to access information, it is critical that someone is responsible for keeping these devices on the child as well as in good working order. It is also necessary that the child be taught to use the additional information they are receiving as a result of the devices.

Preparing the child prior to transition to new activity by: giving a clear ending to the current activity, giving a symbol representing the upcoming event, and/or discussing the upcoming event. Many children become upset when they transition from one activity to another, especially if they are engaged in a preferred activity. Using routines that are structured to give the child a clear signal for the end of one activity and the beginning of the next activity can be very helpful. Calendar systems often help in this effort. Many children only need some discussion of the activity that is coming up to ready them for the transition.

Reducing the effects of anxiety related to deaf-blindness by: limiting the number of people; providing a predictable environment; reducing performance demands; developing instruction around preferred activities; and/or providing choices in activities. Some children with deaf-blindness have difficulty feeling safe in a world that alternately "comes at you" or "disappears in thin air." Their communication skills may also make it difficult for them to express their feelings and desires readily to all the individuals they encounter. The items listed above may offset these problems.

In general, finding ways to make the environment more predictable can help reduce anxiety. It is also important that these children have some control in their lives.

Section 5 - REQUIRED EQUIPMENT / ASSISTIVE TECHNOLOGY

Children with deaf-blindness need to have access to a variety of adaptive/assistive devices. Many of these are listed below:

  • personal hearing aids and glasses
  • low vision devices such as CCTV, monoculars
  • easel, book stands
  • assistive listening device such as FM systems, vibrotactile aids, or auditory loops
  • alerting devices such as vibrating alarms
  • captioning for television and video materials
  • computer aided real time (CART)
  • lamps or spotlights on interpreter to help the child in visually accessing the information that is being signed
  • TDD/telebraille devices for making phone calls
  • calendar system for specific communication needs and structuring of the daily, weekly or monthly activities
  • relay services

You may need to reference other materials to help in determining the most appropriate modifications for the student in your classroom. Some of the materials that we feel would be helpful are listed below. You may also call with questions regarding modifications.

OTHER READINGS AND REFERENCES

Baker, Charlotte & Cokely, Dennis (1988). American Sign Language: a teacher's resource text on grammar and culture. Silver Springs, MD: T.J. Publishers.

Gustason, Gerilee & Zawolkow, Ester (1993). Signing Exact English. Los Alamitos, CA: Modern Signs Press, Inc.

Humphries, Tom, Padden, Carol, & O'Rourke, Terrence J. (1980). A Basic Course In American Sign Language. Silver springs, MD: T.J. Publishers.

Reed, Charlotte M., Delhome, Lorraine A., & Durlach, Nathaniel I. (1995). A study of tactual reception of sign language. Journal of Speech and Hearing Research, Vol. 38, 477-489, April 1995.

Smith, Theresa (1992). Guidelines for working/playing with deaf-blind people. Monmouth, OR: D-B LINK.

Watkins, Susan & Clark, Thomas P. (1991). A coactive sign system for children who are dual sensory impaired. American Annals of the Deaf, Vol. 136, No. 4, pages 321-324.