Understanding Disability: A Lifespan Approach
Publication Year: 1998
Beginning with infancy and the diagnosis of congenital or early onset disabilities, this book identifies traditional developmental life stages for those with disabilities as well as the impact of disability at each of these periods. It then provides specific information for four different disabilities: Down's syndrome, visual impairment, cerebral palsy and spina bifida. Spinal cord injury at the young adult stage of development is also included. With this knowledge, the reader can determine expected age-appropriate activities and accomplishments as well as some adapted expectations. In keeping with a social work emphasis on strengths, the book is based on a social, rather than medical, model of disability. The information
- Front Matter
- Back Matter
- Subject Index
- Family and Disability
- Support for Parents
- Variations in Child Rearing
- Gender and Family Interaction
- Chapter 1: Infancy: Birth to Six Months
- Expected Physical Development
- Typical Social Development
- Expected Cognitive Development
- Summary of Tasks
- Infants with Disabilities
- Chapter Summary
- Discussion Questions
- Chapter 2: Toddler: Six Months to Two Years
- Expected Physical Development
- Cognitive Development
- Summary of Tasks
- Children with Disabilities
- Chapter Summary
- Discussion Questions
- Chapter 3: Preschool: Two to Five Years
- Expected Physical Development
- Cognitive Development
- Children with Disabilities
- Summary of Tasks
- Chapter Summary
- Discussion Questions
- Chapter 4: School Age: Six to Twelve Years
- Physical Development
- Social Development
- Cognitive Development
- Summary of Tasks
- Children with Disabilities
- Chapter Summary
- Discussion Questions
- Strengths-Based Services
- Chapter 5: Adolescence: Thirteen to Nineteen Years
- Physical Development
- Social Development
- Cognitive Development
- Leisure and Recreation
- Career Development
- Self-Care and Household Responsibilities
- Summary of Tasks
- Teens with Disabilities
- Discussion Question
- Chapter 6: Young Adult: Nineteen to Thirty-Five Years
- Summary of Tasks
- Young Adults with Disabilities
- Discussion Question
- Chapter 7: Middle Adult: Thirty-Six to Sixty-Five Years
- Summary of Tasks
- Midlife Adults with Disabilities
- Discussion Questions
- Chapter 8: Older Adult: Sixty-Six Years and Older
- Summary of Tasks
- Older Adults with Disabilities
- Discussion Question
SAGE Sourcebooks for the Human Services Series[Page ii]
Series Editors: ARMAND LAUFFER and CHARLES GARVIN
Recent Volumes in This Series
HEALTH PROMOTION AT THE COMMUNITY LEVEL
edited by NEIL BRACHT
FAMILY POLICIES AND FAMILY WELL-BEING: The Role of Political Culture
by SHIRLEY L. ZIMMERMAN
FAMILY THERAPY WITH THE ELDERLY
by ELIZABETH R. NEIDHARDT & JO ANN ALLEN
EFFECTIVELY MANAGING HUMAN SERVICE ORGANIZATIONS
by RALPH BRODY
by KRIS KISSMAN & JO ANN ALLEN
SUBSTANCE ABUSE TREATMENT: A Family Systems Perspective
edited by EDITH M. FREEMAN
SOCIAL COGNITION AND INDIVIDUAL CHANGE: Current Theory and Counseling Guidelines
by AARON M. BROWER & PAULA S. NURIUS
UNDERSTANDING AND TREATING ADOLESCENT SUBSTANCE ABUSE
by PHILIP P. MUISENER
EFFECTIVE EMPLOYEE ASSISTANCE PROGRAMS: A Guide for EAP Counselors and Managers
by GLORIA CUNNINGHAM
COUNSELING THE ADOLESCENT SUBSTANCE ABUSER: School-Based Intervention and Prevention
by MARLENE MIZIKER GONET
TASK GROUPS IN THE SOCIAL SERVICES
by MARIAN FATOUT & STEVEN R. ROSE
NEW APPROACHES TO FAMILY PRACTICE: Confronting Economic Stress
by NANCY R. VOSLER
WHAT ABOUT AMERICA'S HOMELESS CHILDREN? Hide and Seek
by PAUL G. SHANE
SOCIAL WORK IN HEALTH CARE IN THE 21st CENTURY
by SURJIT SINGH DHOOPER
UNDERSTANDING DISABILITY: A Lifespan Approach
by PEGGY QUINN
SELF-HELP AND SUPPORT GROUPS: A Handbook for Practitioners
by LINDA FARRIS KURTZ
Copyright © 1998 by Sage Publications, Inc.
All rights reserved. No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the publisher.
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Library of Congress Cataloging-in-Publication Data
Understanding disability: a lifespan approach / by Peggy Quinn
p. cm. — (Sage sourcebooks for the human services; vol. 35)
Includes bibliographical references and index.
ISBN 0-7619-0526-X (cloth: acid-free paper). — ISBN 0-7619-0527-8 (pbk.: acid-free paper)
1. Handicapped children—Development. 2. Handicapped—Rehabilitation. 3. Developmental psychology. I. Title. II. Series.
This book is printed on acid-free paper.
98 99 00 01 02 03 10 9 8 7 6 5 4 3 2
Acquiring Editor: Jim Nageotte
Editorial Assistant: Kathleen Derby
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Indexer: Juniee Oneida
Print Buyer: Anna Chin
This book is designed as a supplemental text for Human Behavior in the Social Environment courses in Social Work and for Lifespan Human Development courses in Family Studies, Sociology, or Psychology. Its purpose is to provide information on people with disabilities at each of the major life stages.
During the mid-1900s, many people who had disabilities either died at a young age or were virtually hidden from public view in their homes or in institutions. Advocacy efforts by people with disabilities and their families have led to massive reforms in education and in public access. Now, with improvements in medical care and educational and training techniques, and in access to housing, transportation and employment, people who have disabilities tend to experience much the same life expectancy as their peers. They are involved in the same jobs, recreational pursuits, and family crises as the rest of society. This greater integration into mainstream society means that professionals working with families will encounter even larger numbers of clients who have disabilities. It is important to have some knowledge and understanding about their lives.
The basic tenet of the book is that all people have strengths and abilities and all individuals experience development throughout their lives. By understanding the expected developmental progress of individuals with disabilities, social workers and other family professionals will be able to make better plans, provide more appropriate assistance, and serve as links to an ever-expanding pool of resources.[Page x]
To Karen, Diane, Danny, Pat, and Paul who provided my initial education in child development.
To Emma and Clair who continue to test and to build my knowledge about children.
To all those who thoughtfully and carefully reviewed and corrected this work:
Nita Anderson, BS
John Haenes, MSSW
Melba Anderson, BS
Karen Daly, MSSW, MPA
Jennifer Rankin, BA
Ann Rankin, MSW
Daniel Kocurek, MD
Barbara McCloskey, Pharm.D.
Special thanks go to Jim Nageotte, my editor at Sage and to Charles Garvin, coeditor of the Social Work series. Their professionalism and support were indispensable in bringing this book from idea to reality.[Page xii]
This book is about people who have disabilities and their progress through the life span. Though the Council on Social Work Education requires inclusion of course content on disability studies, little information is available to supplement the data typically included in courses such as Human Behavior in the Social Environment or Human Development (Rubenfeld & Schwartz, 1996). The purpose of this book is to present information regarding “normal” development through the life span for those whose progress may not match typical or expected trajectories. This knowledge can, then, assist social workers and other professionals in a variety of settings as they work with people with disabilities throughout their lives.
The first part of this Introduction presents the developmental perspective that serves as the theoretical base for the book. The second section addresses the concept of family. For most people, their families serve as a major source of support. Because the concept of family and the concept of disability vary widely depending on a person's cultural and religious background, some information is offered regarding the effect of different cultural ideas about disability. The last family-related issue is the effect of gender on the assignment of tasks and roles.
Understanding some of the historical views of disability is critical in being able to analyze the reasoning behind laws, policies, and programs that have, at least theoretically, been designed to assist people with disabilities. The third section, therefore, summarizes some ideas about disability, its causes, and its effects. Following that is a brief discussion [Page xiv]about some of the policies and programs that affect the lives of people with disabilities. The final section provides a discussion of some of the roles social workers play.
Terminology used in this book follows the “people first” standpoint. Every individual is a complex mixture of characteristics. One attribute cannot describe the entire person but accentuating problems and deficits can create a subtle negative web of expectations about that individual (Saleebey, 1992). Language such as “retarded person” or “confined to a wheelchair” focuses on only one aspect of the person, possibly obscuring the person's true characteristics. The language of choice for this book, then, primarily denotes the person, with the attribute being de-emphasized (e. g., people with disabilities, person with mental retardation) (Humes, Szymanski, & Hohenshil, 1995). No person is only a Texan, or a redhead, a scholar or a wheelchair user. “People first” terminology acknowledges this fact.
To support awareness of the fact that disabilities occur in women and in men, pronouns referring to gender are alternated by chapter. Not all infants are girls, nor are all toddlers boys. Nevertheless, this mechanism avoids the cumbersome “she or he” without relying on the “universal male.”Developmental Perspective
The developmental perspective is based on the work of Jean Piaget and Henry Werner. Piaget (Piaget & Inhelder, 1969) describes the child's progress from concrete learning based on her own body to the acquisition and use of abstract concepts. Each developmental stage relies on knowledge and skills acquired in prior phases. Werner (1990) emphasizes that individuals can develop resilience to counteract the effects of vulnerability. The person also has a better chance of overcoming biological or psychological risk factors if counterbalancing protective factors are present and supported.
The foundation of the developmental perspective is that as the individual develops, body systems grow and differentiate. At the same time, the person's increasing cognitive capacities are used to organize knowledge and acquire new and more complex skills (Hodapp & Zigler, 1990). A developmental perspective also focuses on the interaction between the person with a disability and the environment. The expectation is that this interaction is bidirectional
[Page xv]The developmental perspective has, therefore, been selected as the most appropriate context in which to learn about the effects of disability at various stages of life. The emphasis is on assessing capacities as well as weaknesses, and then on manipulating the environment to support the individual's strengths. It is important to recognize that, in sustaining maximum development, assistance and services should enable the person to continue moving at her or his own pace toward goals that are appropriate for that individual's unique combination of abilities and differences. Most people with disabilities have a long life expectancy and follow the same developmental sequence as others. The expected timetable for completing various developmental tasks may differ, however, and some people will mark success in the life stages in an atypical manner. Using the timetables in traditional developmental theories may focus attention on a person's limitations, leaving little room for celebration of the developmental markers that are reached, albeit sometimes in a different manner. For instance, Erikson (1963), with his emphasis on bladder and bowel continence as the primary indicator of competence, ignores those who are highly competent in managing their lives without traditional “continence” (Owen, 1985).
Another consideration in the development of people who have disabilities is that the very presence of the disability can influence their perception of self and the world around them. The stereotypical expectation by some professionals, as well as the general public, is that everyone experiences life and the environment in the same way. It is vital for social workers and other professionals to recognize that the individual's body and its functioning, as well as personal experience of the world, heavily influence how the person views life.Family and Disability
For most people, developmental progress from birth to death occurs, at least in part, within the context of family. The beliefs, resources, strengths, and limitations of that family color its members' perceptions of the causes and results of disability, their relationship with the person who has a disability, and their management of interactions with the wider social and physical environment in which the family is embedded. One of the most striking events for a family is being informed that their child has a disability.[Page xvi]Diagnosis of the Disability
As discussed further in Chapter 2, the diagnosis of a disability is one of the most difficult events most families encounter. This may happen prior to a child's birth, soon after birth or, in the event of accident or illness, when the person is grown. The diagnosis of a disability can be traumatic for a family. Many professionals expect the family's reaction to be one of sadness, depression, or denial (Olshansky, 1962), but the research on which this expectation is based was conducted over 30 years ago. It is important for social workers to recognize the wide variety of responses a family may have to the disability of one of its members.
Families differ in their reactions to disability and in their coping styles. Whereas some may feel sad or depressed, other families appear to experience no negative effects and their adaptation seems quite satisfactory (Leyser, 1994).
In comparison to the situation only a few years ago, many resources are currently available for the person with the disability and for the family. People with disabilities are visible in politics, business, and the media, encouraging parents to visualize their children as successful, independent adults (Kingsley & Levitz, 1994). Depression and sadness need not be the expected response to learning that a family member has a disability, but when professionals anticipate such response, they will usually find it.Adaptation
The family's success in adjusting to the presence of a person with a disability will depend in part on its ability to adapt internally and externally. Roles and tasks will be negotiated, boundaries will be adjusted, and external systems will be affected as the family becomes involved with a variety of service agencies, parent groups, school systems, and training programs (Crnic, 1990). It is unlikely that the family will reach a long-term, stable state of adaptation. Instead, a more realistic goal is an ongoing adjustment to the changing needs of its members and the constantly varying demands of bureaucracies that purportedly serve the family.Cultural Competence and Family Professionals
A family's functioning results from the interaction of their beliefs, their resources, and the unique manner in which they respond to mundane [Page xvii]and critical events in their lives. Some of the areas in which families manifest diverse views include parenting styles, beliefs about causes and consequences of disability, concerns about seeking help, and relationships with medical or social service personnel. It is vital for social workers, and others who work with families of people with disabilities, to be culturally sensitive and to strive for cultural competence. This means having some understanding of general patterns of belief and behavior that characterize some racial and ethnic groups. It also implies being aware of various religious convictions that may dramatically influence a family's response to the disability of one of their members and their subsequent interactions with institutions such as hospitals, schools, and other bureaucracies.
In working with families, many social workers and rehabilitation professionals assume that other people share their cultural views regarding concepts such as appearance, functional ability, success, and death. This rather ethnocentric view may not be appropriate. In reality, the only way to clearly understand the views of the family is to ask. Honesty about one's own lack of knowledge of the family's backgrounds, beliefs, and values can invite open communication (May, 1991).
New research is emerging on various cultures and their beliefs. Given the influx of new immigrant groups into many areas of the United States, social workers would do well to investigate the literature and, even more important, seek the assistance and support of people from these various cultures. If the worker approaches the family of a person with a disability with the attitude that they have different but equally valued cultural beliefs, the chances of a productive relationship are greatly increased. Among other concepts, the worker needs to understand the family's social traditions, philosophies, technological and financial resources, and ways of resolving conflict (Kagawa-Singer, 1994).
Clear communication and clarification of the family's views on the origin, meaning, and consequences of the disability may prevent the worker's labeling them as noncompliant or neglectful. Though the stance of the family may be viewed by outsiders as irrational or even harmful, it probably has a strong base in the cultural and community belief system. In some cases, the very labeling of the disability may be the source of difficulty for the family. If they do not agree that the person is “disturbed,” “retarded,” or “disabled” they may see no reason to enroll in special programs, spend time on painful therapeutic exercises, or attend assessment and monitoring meetings (Kagawa-Singer, 1994). If the person is functioning adequately within the family and the community, [Page xviii]it makes little sense for the family to spend scarce resources such as time and money to correct what they see as nonexistent difficulties.
Understanding a family's beliefs and concerns about disability, health care, and involvement in bureaucratic systems is vital in order to involve the family in an assessment of its strengths and weaknesses and in developing appropriate interventions. If the family is not included when the therapeutic regime is established, they may have little reason to support and administer one more set of activities imposed by people who may not be viewed as having their best interests at heart (Alston & Turner, 1994).
Within each family, certain roles and rituals persist. Assistance or instruction that violates these traditional behaviors will not be accepted or followed willingly. The social worker must investigate carefully to understand what the family does, how they accomplish their goals, and what their needs are. The socioeconomic and educational level of the parents and their geographic and cultural location will influence their behavior, their choices, and the limits on both of these.
If a family has rituals to help make sense of the world and to solidify its place in that world, it may be important to help them find ways to include the person with a disability in those rituals. Remembering that the person with a disability, as well as all the other family members, will be continually developing, they may need this assistance at a variety of developmental stages. Various modes of including a person into a Thanksgiving dinner or birthday celebration will be different when the person is a child, a young adult, or an elder.
Family myths and stories are an important factor in the family's understanding of itself and its history (Sameroff & Fiese, 1990). The person with a disability needs to be part of these stories and to be able to relate them as well.Religion
Some cultures regard disability as a punishment or a result of evil spirits or witchcraft (Atkinson & Hackett, 1995) and, therefore, the disability may be viewed as retribution for some sins of the person, the family, or even the community. The intervention of a social worker may be regarded as superfluous or even as a challenge to God. On the other hand, the child with a disability may be seen as a gift from a God who is confident that the parents are capable of caring for this special person [Page xix](Kagawa-Singer, 1994). In this kind of case, the parents will not seek or welcome intervention to ameliorate the disability or its consequences.Gender
Since the advent of the Industrial Age, the role of caretaker has generally been assigned to women. As the provision of care for people with disabilities has moved from the institution to the community and family, an unspoken expectation is that much of this care will be provided by women—unpaid and with no provision for retirement, health care, or other benefits (Quinn, 1996). This role affects the ability of women to participate in the paid workforce and therefore frequently reduces a woman's power in the family and in the community. One consequence of the assignment of caretaking roles to women has been the erection of perceived barriers to men's participation in certain aspects of the family's interaction. These traditional views are being challenged, however, by the rising employment rates of women and increased involvement of men in the lives of their children.Models of Disability
The medical model of disability is grounded, at least in part, on Parson's (1951) “illness model” in which he describes the criteria for being excused from certain expectations based on one's illness. Under this model, the sick person is released from some social obligations and receives special treatment, provided there is evidence of active efforts to get well. Unquestioning compliance with the orders and regimens prescribed by medical professionals is another component of the sick role (Parsons, 1958). This view may be appropriate for someone with an illness or acute injury. Those with permanent disabilities or chronic illness, however, will probably not “get well.” Most people with disabilities will simply stabilize, adapt, and manage their lives. They will not be “cured.”
In general, interventions based on this medical model are intended to cure the conditions or provide an elaborate system of care. They focus on modifying the person, assuming that any difficulties lie in the individual's deviation from “normal,” rather than in the lack of accommodation within the environment (Finkelstein, 1991).
[Page xx]The social model of disability has emerged from research conducted largely by people who have disabilities (Swain, Finkelstein, French, & Oliver, 1993). This model contends that even though a person with a disability may function differently from some other people, the problems the person encounters do not result entirely from the nature of the disability (Quinn, 1995). The barriers result, at least in part, from unfounded stereotypes and prejudices toward those with disabilities (Funk, 1987). Such attitudes can reinforce an expectation of deviance, incompetence, and poor health (Gartner & Joe, 1987) that may limit social, vocational, and recreational participation. As the person who has a disability recognizes and acknowledges the numerous barriers erected by society, feelings of depression, passivity, or hopelessness may emerge, and these may be interpreted by outsiders as a lack of motivation and adjustment.
A social model of disability sees the problem as located within society. Rather than attempting to change or fix the person with the disability, the focus should be on the removal or amelioration of social and environmental barriers to full social, physical, career, and religious participation (French, 1993).
The idea of a total societal accommodation to the presence of disability is not a new one. Nora Groce tells of the social and linguistic adaptations used by residents of Martha's Vineyard from the 17th to the early 20th century. The island population contained a large number of people with a hereditary form of profound deafness. Most of the hearing people of the island became bilingual in sign and in verbal language to be able to communicate effectively. Because people with and without hearing impairments were able to communicate, neither group was regarded as being handicapped (Scheer & Groce, 1988).
In the field of disability research, most writers today recognize that the problems and barriers are not in the individual who has a disability but in the environment that erects barriers to participation. The social model of disability requires that society address barriers to inclusion rather than spending money on segregation of this population (Finkelstein, 1991).Laws and Policies
One of the outcomes of a society's views on disability is the array of laws and policies designed to provide programs, funding, or other [Page xxi]assistance. The United States has no disability policy (Berkowitz, 1987). Instead, it has an array of disjointed and often conflicting laws and programs. If there were a national disability policy, it would be evident in consistency across programs in regard to qualifications for service, and across benefits to eliminate gaps in the provision of essential assistance.
To qualify for Vocational Rehabilitation, for example, a person must demonstrate some potential either for employment or for substantial improvement of quality of life. On the other hand, receipt of Social Security Disability Income requires evidence that a person can engage in no substantial gainful activity.
It is highly unlikely that most social workers will have a comprehensive and accurate understanding of the vast array of laws and programs related to disability. It is important, however, to have at least a cursory awareness of some of the major legislation and the benefits that are available. Appendix C contains a brief summary of some of the major legislation related to disability.Social Work Roles
Social workers are trained to assess the person and the situation, taking care to start where the client is. This requires understanding the view people with disabilities have of themselves, their limitations, and their potential (Smith & Smith, 1991). Knowledge of various developmental life tasks and mechanisms for promoting successful completion of these tasks is also necessary (Kaplan, 1982). Using the strengths approach in working with people who have disabilities leads the social worker to examine the interrelationships of the individual's particular abilities and disabilities, the family, the community, the geographical and cultural setting, and the attitude of the community toward those with disabilities (Saleebey, 1992). It is essential to consider the whole person in the environment where she or he actually functions. Social workers, aware of various cultural and religious tenets, can advocate for the inclusion of these beliefs—along with components such as housing, transportation, medical care, and vocational training—into the plans that are established. Such a focus on differing client beliefs promotes the traditional social work value of client self-determination (Congress & Lyons, 1992).[Page xxii]Case Manager
In implementing policies and providing services to people with disabilities, social workers carry out a wide variety of roles. Some serve as case managers in settings such as early intervention programs, schools, managed care entities, nursing homes, residential treatment centers, rehabilitation centers, or hospitals. In this role, the social workers act as liaisons between families, people with disabilities, and the professionals assigned to provide services. This may mean translating medical terms, tracking down elusive benefits or equipment, and collaborating with other professionals. One of the pitfalls of the case manager's role is the tendency to define the client's need according to what is available within the established system rather than stretching boundaries and possibly challenging current arrangements to obtain what is truly needed (Kuehn, 1995).Collaborator
Provision of services requires collaboration with many other professionals. Within the health care field, this includes occupational therapists who assist the person in managing daily activities and in adapting the environment to allow maximum independence and activity. Physical therapists focus on increasing range of motion, strength, and endurance. Speech pathologists work on language skills but also assess and treat chewing, swallowing, or eating difficulties. Medical doctors, nurse practitioners, and physician assistants provide diagnoses, medications, and other needed treatment.Advocate
Though a social worker may have a firm identity as a direct service worker, after being confronted with conflicting rules and regulations between programs, with shortage of necessary services, and continually shrinking funding sources, the roles of advocate, community activist, or political consultant do not seem quite as foreign. To explain the needs of clients or the impossibility of negotiating the system to obtain benefits, the social worker will need to be available to legislators, regulators, and funding sources (Smart & Smart, 1995). Ignoring the macro aspects of social work is not an option for the responsible and ethical worker.[Page xxiii]Home Visitor
The role of home visitor emerges from a long tradition, dating back to the Charity Organization Societies. This role has been re-emphasized in Family Preservation programs and is an important component of services to people of all ages who have disabilities.Resource Locator
The field of disability services features many accessible resources and many that are nearly invisible. An important task of the social worker is constant vigilance regarding potential sources of information, technology, funding, or other valuable assets. Parent support groups, groups arranged around particular disabilities, accessible transportation or leisure activities, little known funding sources, and libraries or Internet sites are some of the treasures the worker may accumulate for the future. Appendix A lists some national organizations related to particular disabilities and also identifies support groups that are active in many areas.SummaryDevelopmental Perspective
Issues in Working with Families
- Development is innate
- To reach maximum developmental levels, a person's unique abilities and timing should be supported
Models of Disability
- Recognize and value the family's cultural and ethnic background
- Identify and respect religious beliefs and customs
- Realize that the family's views of the causes and consequences of disability can affect their willingness to participate in prescribed activities and programs
- Develop an extensive and current base of resources to provide support for the person with the disability and the family
[Page xxiv]Social Work Roles
- In the medical model, change efforts focus on either curing or caring for the individual
- The social model identifies the environment as the focal point for change
- Serving as case managers
- Collaborating with other professionals
- Advocating for policy changes
- Home visiting
- Finding and developing resources
Appendix A: Resources[Page 189]National Organizations
American Foundation for the Blind
11 Penn Plaza, Suite 300
New York, NY 10001
ARC (Association for Retarded Citizens)
500 E. Border Street
Arlington, TX 76010
National Down Syndrome Congress
1605 Chantilly Drive, Suite 250
Atlanta, GA 30324
National Easter Seal Society
230 W. Monroe Street, Suite 1800
Chicago, IL 60606
National Information Center for Children & Youth with Disabilities (NICHCY)
P. O. Box 1492
Washington, DC 20013
National Spinal Cord Injury Foundation
600 W. Cummings Park, Suite 2000
Woburn, MA 01801
Spina Bifida Association of America
4590 MacArthur Blvd. NW, Suite 250
Washington, DC 20007-4226
United Cerebral Palsy Association
1522 K Street NW, Suite 1112
Washington, DC 20005[Page 190]State and Local Organizations
State Mental Health Mental Retardation Agency
State Commission for the Blind
Mental Health Association
Family Service Association
Child Guidance CentersNewsletters and Journals
- American Rehabilitation
- P. O. Box 371954
- Pittsburgh, PA 15150-7954
Published by the Department of Education Superintendent of Documents
- Brimstone Bulletin
- P. O. Box 21304
- Eugene, OR 97402
A newsletter confronting disability issues with combustible humor and sentiment. Published by The Mothers from Hell
- Down Syndrome News
- 1605 Chantilly Drive, Suite 250
- Atlanta, GA 30324
Newsletter of the National Down Syndrome Congress
- Exceptional Parent
- P.O. Box 3000 Dept. EP
- Denville, NJ 07834-9919
- One Dupont Circle, Suite 800
- Washington, DC 20036-1193
National Clearinghouse on Postsecondary Education for Individuals with Disabilities
- The Rural Exchange
- 52 Corbin Hall
- The University of Montana
- Missoula, MT 59812
Published by Montana University Affiliated Rural Institute on Disabilities
[Page 191]BooksAccess for Technology Association. (1996). Computer resources for people with disabilities. Alameda, CA: Hunter House.Access for Technology Association (ATA) has published information for people with disabilities about choosing a computer. This book provides excellent information about what computers can do and what steps can be taken to ensure that the appropriate computer is chosen.1995). Raising a child who has a physical disability. New York: John Wiley.(For parents who are attempting to negotiate the many systems designed to serve their children, this book is an excellent resource. It describes the child's rights, the obligations of schools and other institutions, and some strategies for obtaining what the child needs. The information in Appendix B, regarding files that families should maintain, came from this book.1992). Children with disabilities: A medical primer (, & (3rd ed.). Baltimore: Brookes.To understand various medical terms and the conditions or remedies they describe, this book is an excellent reference for social workers and other professionals and for parents.1991). Children with cerebral palsy: A parents' guide. Rockville, MD: Woodbine House.(This is one of a series of books from Woodbine that give parents and others a good view of a particular disability.1992). Summary of existing legislation affecting people with disabilities. Alexandria, VA: Office of Special Education and Rehabilitative Services., , & (Though several important pieces of legislation have been passed and implemented since this book was published, its description of some of the seminal laws and policies serves as an excellent base in understanding disability policy.[Page 192]1996). Children with visual impairments. Bethesda, MD: Woodbine House.(This is a gentle and helpful book on visual impairment.1986). Babies with Down syndrome. Rockville, MD: Woodbine.(This is another excellent Woodbine book. It is often distributed to new parents of infants who have Down syndrome.
- Social Security Bulletin
- Social Security Administration
- Office of Research, Evaluation, and Statistics
- 4301 Connecticut Avenue, Nw, Suite 209
- Washington, Dc 20008
Appendix B: Personal Information File[Page 193]
Each family should have a secure and organized file of information related to the child. Among other things, this file should contain:
- A certified copy of the birth certificate (the original should be in a safety deposit box)
- Medical records, including letters from physicians supporting requests for special education or other services, immunization records, medication records, and notations about allergies
- Evaluations of the child's need for physical, occupational, speech or other therapy, or any other special testing that may have been conducted
- School records, including results of IEPs and diagnostic tests, report cards, and any letters to and from the school district. In addition, dated notes about telephone conversations to any service providers should be kept
- Communication records such as notes to and from teachers regarding daily activities
- Social service agency information, including the name, telephone number and address of the agency, the contact person, and any services that were provided
- Future reference materials, possibly including information about camps, schools, equipment, books, or sources of assistance
- Medical equipment suppliers, listed with their telephone numbers and addresses and the contact person or sales person. The type of equipment, date of purchase or lease, and a copy of the purchase order should be included. In case of breakage, this information will be available so that parts can be ordered or repairs made. Having dated information may mean being able to document that the item is still under warranty
- Bragging rights—the good things such as ribbons, awards, notes about good conduct, and examples of art and craft work, reminding parents of their child's progress
These excellent ideas came from Albrecht (1995).
Appendix C: Summary of Selected Legislation[Page 194]Education of all Handicapped (1975) PL-94-142
This was the first law to guarantee a free and appropriate public education to all children with disabilities.Individuals with Disabilities Education Act (IDEA) PL-101-476
The purpose of the IDEA is to ensure the provision of a free and appropriate public education for all children with disabilities. These children should be integrated into regular classrooms to the maximum extent possible (Gettings, Carson, & Croston, 1992).
Part H of the IDEA provides for early intervention programs for infants and toddlers. The family, along with any professionals appropriate for the child's needs, formulates the individual family service plan (IFSP), which lists the goals the family has set for the child and describes services to be provided and persons responsible for these services.
Part C of the IDEA establishes Early Childhood Education services that are to be provided to children from birth through age 8.Social Security Amendments PL-89-97Social Security
Several programs are available under the auspices of the Social Security Administration. Some are entitlement programs, accessible to anyone who meets the criteria of age or disability. Other programs rely on an assessment of the person's financial need to determine eligibility. Among the entitlement programs are Old Age, Survivors and Disability Insurance (OASDI) and Social Security Disability Insurance (SSDI); Supplemental Security Income (SSI) is based on demonstrated financial need.
[Page 195]Title II—Social Security Disability Insurance (SSDI) provides monthly cash benefits that are paid directly to eligible people with disabilities. The amount of the payment is based on the person's earnings history and length of employment as well as on the age at which the disability was incurred. The law places no restrictions on the use of these payments. To qualify for SSDI, a person must have paid Social Security taxes for approximately half the years since turning 21, be unemployed or earning less than the “substantial gainful activity” level, and have a medical disability certified by the state's Disability Determination Service (Gettings et al., 1992). This means that the person must be unable to engage in any substantial gainful activity because of a physical or mental disability that has persisted, or is expected to persist, for at least 12 months, or to result in death (Albrecht, 1995).
Title XVI Supplemental Security Income (SSI) is a federally administered cash benefits program for those who have disabilities and can demonstrate financial need. SSI benefits are paid from general revenues appropriated by Congress, whereas SSDI benefits come from a special trust fund financed through Social Security taxes (Gettings et al., 1992).
Title XVIII Medicare programs were authorized under the Social Security Act to provide health insurance benefits for people who qualify for Social Security and for those with disabilities (Gettings et al., 1992).
Part A establishes a mechanism for paying for the hospitalization costs.
Part B provides supplemental medical insurance.
Title XIX Medicaid provides for the medical expenses of categorically or medically needy people. These state-funded programs are needs-based with federal matching funds available through an established formula (Gettings et al., 1992).Vocational Rehabilitation Act of 1973
The goal of this act is to assist people with disabilities to regain work skills.
Section 504 prohibits discrimination against persons with disabilities in any organization that receives federal funds.
[Page 196]Title VII is designed to assist persons with disabilities to achieve and maintain independence. Services provided could include occupational therapy, physical therapy, recreational therapy, attendant care, and prostheses.
Title VII Part A: Centers for Independent Living offer advocacy, attendant training, and referrals for housing (Gettings et al., 1992).The Americans with Disabilities Act of 1990 (ADA)
The ADA protects people with disabilities from discrimination in the areas of employment, public utilities (e.g., stores, theaters, hotels), transportation, and telecommunication (Gettings et al., 1992).
Appendix D: Early Intervention Programs[Page 197]
For children with certain diagnoses, federal legislation mandates programming designed to minimize the long-term effects of disability and maximize the child's opportunities for successful functioning. Assessment of the child's physical, social, and cognitive abilities is a major factor in qualification for participation in early intervention programs (Brown & Brown, 1993). Children are eligible if they meet one of three criteria:
- Having an established condition.
- Demonstrating developmental delay.
- Being identified as at risk for becoming substantially developmentally delayed without the provision of early intervention services. The exact definitions of these terms are specified by each state.
Some of the so-called established conditions are as follows: chromosomal anomalies such as Down syndrome; congenital malformations, including spina bifida; blindness, hearing loss or other sensory disorders; and neurological disorders such as cerebral palsy (Brown & Brown, 1993)
“Developmental delays” constitute another diagnostic criteria that can qualify a child for early intervention. This term was first used in special education legislation in 1986 with PL 99-457 (Amendments to the Education for All Handicapped Children Act). Contrary to common usage, developmental delay is not synonymous with mental retardation. In fact, the category was developed to prevent the application of labels that might be harmful or incorrect later in life, while still allowing the child to qualify for needed services. Developmental delays are identified prior to age two and may occur in five areas: physical, cognitive, communicative, social or emotional, and adaptive. A number of tests are available to screen for developmental delays, but parental concern about the child's progress is one of the most reliable early indicators (Brown & Brown, 1993).
[Page 198]The term at risk refers to children who have the potential to encounter delays due to biological or environmental factors in the family history or in the environment. These may include parental drug abuse, a history of prior child abuse, or the child's low birth weight or respiratory distress at birth.Evaluation and Assessment
To plan accurately, the early intervention professionals must assess the abilities and weaknesses of the child and the family. The assessment involves a three part process: medical and developmental history, a physical and neurologic examination, and a developmental screening (Levy & Hyman, 1993). A number of professionals may be involved in the evaluation process. One person must serve as the contact person for the parents to provide interpretation of test results, therapeutic plans, and schedules that inevitably result from team planning. A social worker who serves as a case manager is the ideal in this type of situation.
It is vital to consider the child in the context of the family. The family's strengths, weaknesses, needs, and concerns must be addressed. The geographic location, socioeconomic factors, racial or ethnic characteristics, and educational level of the family will play a part in the success of the interventions.
The child will be tested in five different areas of development: cognitive, communicative, motor, social and emotional, and adaptive (McLean & McCormick, 1993).
For cognitive assessment, some choices are the Bayley Scales of Infant Development—Mental Scales, or the Battelle Developmental Inventory—Cognitive Domain, or the Griffiths Mental Development Scales—Performance Scale.
Communicative development levels may be assessed by utilizing the Sequenced Inventory of Communicative Development (SICD), or the Receptive Expressive Emergent Language (REEL).
The Peabody Developmental Motor Scales (PDMS) or the motor development scales of the Bayley, Battelle, and Griffiths assessments focus on motor skills.
Battelle, Bayley, and Griffiths' scales can be used in measuring social and emotional development, and the Vineland Adaptive Behavior Scales give information on adaptation (McLean & McCormick, 1993).
[Page 199]The purpose of such a thorough assessment is to provide adequate information for setting goals that are appropriate and suitable for the child and the family. Family participation is mandated, important, and relevant. It is also a learned skill. Even highly educated parents can be overwhelmed when considering the outcomes of all the assessments and the huge range of possible goals that can be set for the child. With some guidance from the social worker and other team members, the family can learn the skills of goal setting. Over time, the goals established by the family will become focused and reachable. This is a learning process and a very important one. It serves as a practice time for the goal setting that will be vital when the child enters formal school situations.
The members of the early intervention team may include a psychologist, speech therapist, occupational therapist, physical therapist, social worker, and educators (Levy & Hyman, 1993). It is essential that information from all these sources be coordinated and disseminated by some member of the professional team. In the face of all of this information, the family may feel overwhelmed by the number of professionals, the endless meetings, and the alphabet soup of acronyms for programs, tests, treatments, and benefitsSocial Work Roles
One of the roles of a social worker is as case manager or team member for the early intervention team. Because of the enormous amount of information given to the parents, it is essential that at least one team member consistently provide interpretation and coherence for the family. One problem that may arise is that the parents, in attempting to carry out all the tasks and therapeutic assignments, may lose sight of their parental roles. They may feel that they are constantly being evaluated, and that their success as parents depends on the child's “successful” demonstration of the desired behavior or activity (Cogher, Savage, & Smith, 1992).
Sometimes parents become so focused on performing the activities correctly and properly recording the child's progress for the therapists that the fun of the game or exercise is lost. It is important that parents and child alike enjoy at least some of the assignments or the probability of adherence to the therapists' suggestions is not very high.
Early intervention professionals must also be careful to ask parents about any difficulties they are having in carrying out the various assignments. [Page 200]Parents who do not follow through on suggestions may not be resistant but may not fully understand the exercises or activities and the reasons for doing them. Early intervention team members could use a learning styles assessment to assist them in understanding the optimal format for presenting information to each parent: printed information, videos, observing others, or actual hands-on participation and practice.
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About the Author[Page 232]
Peggy Quinn is Associate Professor of Social Work at the University of Texas at Arlington where she has taught in the bachelor's, master's, and doctoral programs for 7 years. She has a bachelor's degree in sociology with a special emphasis in social work, a master's of science in social work, and a PhD in family studies.
For the past 10 years, she has written in the area of disability policy, with special emphasis on the effects these policies have on women. Her work with people who have disabilities has included serving on the Board of Directors of the Center for Computer Assistance to the Disabled in Dallas, Texas, and the Center for Independent Living in Niagara Falls, New York.
In addition to a chapter on gender interactions in families in Research and Theory in Family Science, she has published several articles in Affilia that focused on women and disabilities. Other research interests include teaching techniques and the use of various strategies that tap students' particular strengths and abilities.