DOCUMENT RESUME ED 267 548 EC 182 068 TITLE Families with Disabled Children: Issues for the 1980's. Hearing before the Select Committeeon Children, Youth, and Families, House of Representatives, Ninety-Ninth Congress, First Session (April 19, 1985, Anaheim, CA). INSTITUTION Congress of the U.S., Washington, DC. House Select Committee on Children, Youth, and Families. PUB DATE 85 NOTE 311p.; Parts of document contain small print. AVAILABLE FROMSuperintendent of Documents, U.S. Government Printing Office, Washington, DC 20402. PUB TYPE Legal/Legislative/Regulatory Materials (090) EDRS PRICE MF01 Plus Postage. PC Not Available from EDRS. DESCRIPTORS *Disabilities; Family Programs; *Family Relationship; Hearings; Respite Care; Severe Disabilities;*Stress Variables IDENTIFIERS Congress 99th ABSTRACT The record of the 1985 hearing addresses policy issues concerning families of disabled children.Statements are presented from parents of severely disabled children,educators, researchers, agency personnel, and disabledconsumers. Topics addressed include sources of family stress, need for financialand respite services, the effects on other family members,the importance of vocational training, the degree of physicianinvolvement, and the extent of families' health care access anduse. Appended papers and supplemental materials, which comprise most of the document,consider such topics as women's labor force activity,iarital dissolution, support for families of autistic and autistic. -like children, and services for infants with special needs. (CL) *********************************************************************** * Reproductions supplied by EDRS are the best thatcan be made * * from the original document. * *********************************************************************** e. .« FAMILIES WITH DISABLED CHILDREN: ISSUES FOR THE 1980'S U.S. DARTMSNT OF EDUCATION NATIONAL INSTITUTE OF EDUCATION EDUCATIONALATIONAL RESOURCES INFORMATION CENTER (EMI The document has been reproduced as mowed from the person of organisation onginehng it O Mow Chingos have been made to improve reproduction quakty. Kent, of view cr °mans stated In this docu- HEARING ment do not necessarily represent offimel NIE positionOfpolicy BEFORE THE SELECT COMMITTEE ON CHILDREN, YOUTH, AND FA:WILES HOUSE OF REPRESENTATIVES NINETY-NINTH CONGRESS FIRST SESSION HEARING HELD IN ANAHEIM, CA APRIL 19, 1985 Printed for the use of the Select Committee on Children, Youth, and Families U.S. GOVERNMENT PRINTING OFFICE 48-137 0 WASHINGTON : 1985 For sale by the Superintendent of Documents, U.S Government Printing Office Washington, DC 20402 2 SELECT COMMITTEE ON CHILDREN, YOUTH, AND FAMILIES GEORGE MILLER, California, Chairman WILLIAM LEHMAN, Florida DAN COATS, Indiana PATRICIA SCHROEDER, Colorado HAMILTON FISH, JR , New York LINDY BOGGS, Louisiana THOMAS J. BLITRY, JR., Virginia MATTHEW F. McHUGH, New York FRANK R. WOLF, Virginia TED WEISS, New York DAN BURTON, Indiana BERYL ANTHONY, JR., Arkansas NANCY L. JOHNSON, Connecticut BARBARA BOXER, California JOHN R. McKERNAN, JR., Maine SANDER M. LEVIN, Michigan BARBARA F. VUCANOVICH, Nevada BRUCE A. MORRLSON, Connecticut DAVID S. MONSON, Utah J. ROY ROWLAND, Georgia ROBERT C. SMITH, New Hampshire GERRY SIKORSKI, Minnesota ALAN WHEAT, Missouri MATTHEW G. MARTINEZ, California LANE EVANS, Illinois ALAN J. STONE, Staff Director anCounsel ANN ROSEWATER, Deputy Staff L sector MARK SOUDER, Minority Staff Director '3 4 CONTENTS Hearing held in Anaheim, CA April 19, 1985 Page Statement of: 1 Bertaina, Beverly parent, Sebastopol, CA Brees, Stephen, consultant, Fountain Valley 3 Valley, CA School District, Fountain 47 Butler, John A., coinvestigator, collaborative studyof children with spe- cial needs, the Children's Hospital Medical Center, Boston, MA 29 Latzko, Trudy, program director of developmentalserviccd department, Family Service Agency of San Francisco, SanFrancisco, CA Poyadue, Florene M., parent and executive 51 Parents, Inc., Sar Jose, CA director, Parents Helping Short, Mary K., parent, Fountain Valley, CA 55 9 Turnbull, Ann P., acting associate director,Bureau of Child Research, University of Kansas, Lawrence 17 Vincent, Lisbeth J., associate professor, departmentof studies in behav- ioral disabilities, University of Wisconsin,Madison 12 Ziegler, Martha, parent and executive director,Federation for Children With Special Needs, Boston, MA 63 Prepared statements, letters, supplementalmaterials, etc.: Anderson, Betsy, Federation for Children with statemten of Special Needs, prepared Bertaina, Beverly: 66 Letter to Select Committee on Children, Youth,mid Families, dated May 20 1985, enclosing answers toquestions of Congressman Lehman Prepared statement of 303 7 Birch, Thomas L., Legislative Counsel,National Committee for Preven- tion of Child Abuse, letter to Ann Rosewaterdated March 31, 1985, enclosing excerpt from "Child Care and the Family",Washington, DC, and several newspaper articles 102 Borman, Leonard D., Ph.D., president andfounder of the Self-Help Center, Evanston, IL, prepay c,1 statement of 100 Brees, Stephen Robert, prepared statementof 50 Breslau, Naomi, Ph.D., associate professor ofsociology: Letter to Select Committee on Children, Youth, April 4, 1985 and Families, dated 183 "Use of Health Services by Chronically Illand Disabled Children," article entitled 199 "Women's Labor Force Activity and Responsibilitiesfor Disabled Dependents: A Study of Families with Disabled entitled Children," article 184 Bristol, Marie M., Ph.D., senior investigator, researchassistant profeswr, division TEACCH, department of psychiatry: Letter to Select Committee on Children, Youth,and Families, dated April 10, 1985 154 "Marital Dissolution in Families of YoungHandicapped and NonhaL- dicapped Children," article entitled "Support For Families of Autistic and Autistic-Like 155 entitled Children" paper 161 Burchill, Rhys, Huntington Beach, CA.,Letter to Chairman George Miller, dated April 15, 1985 Letter from Barbie Langefeld dated April 12, 1985 177 Letter to Barbara Langefeld from Mrs T. 178 18, 1985 Thompson, dated January 182 4 IV Page Prepared statements, letters, supplemental materials, etc.Continued Burchill, Rhys, Huntington Beach, CA., Letter to Chairman George Miller, dated April 15, 1985Continued Letter to Barbara Langefeld from Mrs. T. Thompson, dated April 2, 1985 181 Letter to Mrs. Teddy Thompson from Barbie Langefeld, dated April 10, 1985 180 Burley, Margaret, executive director, Ohio Coalition for the Education of Handicapped Children Worthington, OH 297 Butler, John A., Children's Hospital, Boston, MA: "Health Care Access and Use Among Handicapped Students in Five Public School Systems," article entitled 125 Prepared statement of 32 C,erreto, Mary C., Ph.D., associate professor of pediatrics, pediatric psy- chology, University of Texas Medical Branch, Galveston, TX article entitled "Strategies in Genetic Counseling: Clinical Investigation Stud- ies" from March of Dimes Birth Defects Foundation White Plains, NY 110 Chan, Sam, Ph.D., University Affiliated Program, Children's Hospital of Los Angeles: "Serving Asian and Hispanic Parents: California Initiatives," article entitled 77 "Multiculture Training-of-Trainers Project" Sacramento, CA, report entitled 88 Chasen, Fran, early childhood specialist director, Infant Development Program, Exceptional Children's Foundation, article entitled "Real Work for Real Pay," from Psychology Today, March 1985 274 "Services for Infants With Special Needs in California: Overview and Recommendations," Infant Development Association, Los Angeles CA, report entitled 280 Childers, Cathy Cook, parent of a child with disabilities, North Carolina, prepared statement of 72 Disability Rights Education and Defense Fund, prepared statement of 166 Downes, Carolyn V., letter to Chairman George Miller, dated April 23, 1985 76 Hailey, Jack, executive secretary, Child Development Programs Advisory Committee, Sacramento CA, prepared statement of 93 Hirsch, Elaine, chief, disabled persons advocacy division, office of the Illinois Attorney General Neil F. Hartigan, prepared statement of 92 LaMarche, Catherine, TASK director, Team of Advocates For Special Kids, Orange, CA, letter to Chairman George Miller, dated April 26, 1985 74 Lambert, Kay, Advocacy, Inc., Austin, prepared statement of 91 Latzko, Trudy, program director of the Developmental Services Depart- ment of Family Service Agency of San Francisco: "Early Childhood Intervention Programs," article entitled 253 Prepared statement of 54 "Reaching Handicapped Children in Their Early Years," article enti- tled 267 "The Argument For Early Intervention," article entitled 265 Miller, Hon. George, a Representative in Congress from the State of California, and chairman, Select Committee on Children, Youth, and Families: Families with Disabled Children (fact sheet) 2 Letter to Ann P. Turnbull dated May 17, 1985, enclosing questions of Congressman Lehman 304 Letter to Beverly Bertaina, dated May 17, 1985, enclosing questions of Congressman Lehman 302 Letter to Florene M. Poyadue, dated May 17 1985, enclosing ques- tions of Congressman Lehman 303 Opening statement of 1 Palmer, William G., letter to Chairman George Miller, dated May 1, 1985 74 Perrin, James M., M.D., senior Research associate, Vanderbilt University, Nashville, TN,Ater to Congressman George Miller enclosing article entitled "Chronically Ill Children in America," from Rehabilitation Literature July-August, 1984, vol. 45, No. 7-8 243 V Page Prepared statements, letters, supplementalmaterials, etc.Continued