DOCUMENT RESUME

ED 071 218 EC 050 390

AUTHOR Rafael, BertaTITLE The Summer Family Conference Report of the Early

Education Program.INSTITUTION United Cerebral Palsy of New York City, Inc., N.Y.SPONS AGENCY Bureau of Education for the Handicapped (DHEW/OE),

Washington, D.C.PUB DATE Jul 72NOTE 51p.

EDRS PRICE MF-50.65 HC-$3.29DESCRIPTORS *Cerebral Palsy; *Conference Reports; *Exceptiona 1

Child Education; Parent Counseling; *ParentEducation; *Physically Handicapped; SummerPrograms

ABSTRACTThe report covers the first 2 years of operation of

the Summer Family Conference, a 5-day program designed to provideintensive educational and counseling services to families with young(2-6 years) cerebral palsied children. Families involved were thoseconsidered hard to reach due to poverty or other factors by UnitedCerebral Palsy of New York City, Inc., the conference sponsor. Thereport of the first and second conferences covers purposes of theconference, a description of the problems of cerebral palsy (medical,learning, psychological, and social problems), planning information(conference format, criteria for selecting familis and site, parentpreparation, transportation), the daily program and activities, andevaluation findings. Appended are detailed conft.irence schedules andvarious forms, questionnaires, and letters related to conferenceplanning and evaluation. (KW)

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UNITED CEREBRAL PALSY OF NEW YORK CITY, INC339 EAST 44h STREET / NEW YORK, NEW YORK 10017

The Summer Family Conferenceof theEarly Education Program

Prepared byBerta Rafael, Early Education Director,

In cooperation withLeslie D. Park, Executive DirectorLeo Meyer, Assistant DirectorPeggy Crull, EvaluatorElsie Thompson, Parent Activity Coordinator

A report of a project carriedon by United Cerebral Palsyof New York City, Inc. incooperation with theBureau of Education for theHandicapped, HandicappedChildren's Early EducationAssistance Act, P.L. 90.538

July, 1972

U S DEPARTMENT OF HEALTH,EDUCATION & WELFAREOFFICE OF EDUCATION

THIS DOCUMENT HAS BEEN REPRODUCED EXACTLY AS RECEIVED FROMTHE PERSON OR ORGANIZATION ORIGINATiNG IT POINTS OF VIEW OR OPINIONS STATED DO NOT NECESSARILYREPRESENT OFFICIAL OFFICE OF EDUCATION POSITION OR POLICY

United Cerebral Palsy of New York City, Inc.

3N39East

York,44NthewStStreet

New k 10017

United Cerebral Palsy of N.Y. City Inc.

OFFICERS

Jack HausmanHonorary Chairman of the Board

Robert I. RoginChairman of the Board

Leo HausmanPresident

Charles E. McCarthyExecutive Vice President

George F. DembowVice President

Albert J. EliasVice President

Mrs. Joseph RothenbergVice President

Samuel GranickTreasurer

Mrs. Martin EatonSecretary

Leslie D. ParkExecutive Director

Norman H. KimballDirector, Fund Raisingand Public Relations

ADVISORY COMMITTEEEarly Education Project

Mrs. Dorotha ConklinMrs. Robert ErbMrs. Elizabeth FreidusHerbert Goldstein, Ph.D.Mrs. Alice HarwoodMrs. Ruth LehrClara Loomanitz, Ph.D.Donna O'Hare, M. D.Isabel Robinault, Ph.D.Mrs. Joseph RothenbergPaul Schreiber, Ph.D

Mrs. Berta Rafael,Director Early Education

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DIRECTORS

Jerome BelsonSeymour BerkowitzHarvey D. CarterSidney Carter, M.D.Mrs. Thomas L. J. CorcoranHarry J. DelaneyErnest FleischerNorman FoxJoseph GindiMrs. Jack GoddardJohn G. HailMrs Jack HausmanMartin HausmanMrs. Charles D. HerbertMrs. William C. LangleyMiss Ida LevineAlan LichtenbergMartin E. McCavitt, Ed.D.Mrs. John R. McCrarySamuel R. MillerMrs. Alan MossJudge Milton MoltenMrs. Louis J. RobbinsFrancis C. Rooney, Jr.Martin RubensteinMrs. Paul N. SaultJoseph SchlusselLeon R. SpearMrs. Harold StorchMilton UngerFrederick D. Wilkinson, Jr.Mrs. Ellis Wilner

Mrs. Morton I. DavidsonPresident, Women's Division

Summer Family Conference Report

Table of Contents

Year One 1

I. Background and Intent of the Summer Family Conference 1

II. The Problem of Cerebral Palsy 1

a. Definitionb. Medical Problemsc. Learning Problemsd. Psychological and Social Problems

III. Preparations 3a. Format of the Summer Family Conferenceb. Criteria for Selecting Familiesc. Conference Sited. Preparation with Parentse. Transportationf. Preparation with UCP Staffg. Planning with Monmouth College Staff

IV. The Daily Program 5

a. Overviewb. Living Arrangementsc. Babysitting Arrangementsd. Staff Work Schedulee. 'Day Camp Schedulef. Evaluation Procedures

V., The Conference 6a. The First Dayb. Subsequent Days

VI. Evaluation 8a. The Questionnairesb. General Findingsc. Tape Recordingsd. Staff Evaluatione. Post Conference Data

VII. Some Unexpected Highlights 11

VIII. The Cost 11

IX. Statistics 11

X. Recommendations for Future Conferences 11

Year Two 12

I. Preparations 12

I I. The Conference 13

I I I Evaluation 13

IV, Statistics 15

V. Recommendations 15

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Summer Family Conference Year One

I. Background and Intent of the Summer FamilyConference

Families of handicapped children are faced with manydifficult problems. United Cerebral Palsy of New YorkCity, Inc., hereinafter referred to as UCP, has been a primemover in the initiation and development of educational,recreational and counseling services for handicappedchildren and their parents. It is within this context thatUnited Cerebral Palsy developed the Summer FamilyConference described in this paper.

The Summer Family Conference was conceived as partof the Early Education Project, a demonstration project todevelop early educational procedures and curricula for veryyoung handicapped children, age 2 to 6 years.

The Early Education Project is partially funded by agrant from the U. S. Department of Health, Education, andWelfare, Bureau of Education for the Handicapped, underthe Handicapped Children's Early Education Assistance Actof 1968 (Pl. 90-538).

The First Summer Family Conference took place fromAugust 30, 1970 to September 3, 1970 at MonmouthCol!lge, West Long Branch, New Jersey. The immediateobjective was to provide intensive educational andcounseling services for families* which in the past had beenconsidered "hard to reach" due to poverty and the manydifficulties inherent in living in a large city with a

handicapped child. The broad long-term goal of theconference was to help parents living in the four boroughsof New York City serviced by UCP, to cope moresuccessfully with some of the difficulties confronting themand their handicapped children.

It was hoped that this could be accomplished byproviding educational and counseling services in an

environment removed from the daily cares of keeping houseand looking after children. It was our further intention thatintensive exposure to pr4chologists, social workers, andteachers in a relaxed atmosphere and pleasant surroundingsmight accomplish this where past procedures had failed.

The specific objectives of the program were as follows:1. to experiment with a new program setting and overall

procedure as a new way of providing counseling andinformation to families with young handicappedchildren;

2. to provide intensive education on the nature of thehandicapping condition (CP) which effects at least

one of the children in the family;3. to provide counseling opportunities in a formal and

informal manner;4. to provide recreation and relaxation to parents

without the concomitant guilt of leaving theirhandicapped child behind;

5. to give parents a holiday from daily routines.

For the purpose of the paper, the term "family" means all thosepeople who constituted the immediate household in which thehandicapped child lived.

In the past it was not easy to involve families that hadmany difficulties in daily living with which to contend.Many of these difficulties were related to inner cityproblems, to poverty and to different cultural and ethnicbackgrounds; these burdens often outweighed the problemof care for the handicapped child in the household. It washoped that an intimate environment away from the dailyproblems would enable families to participate in intensiveeducation and counseling and open avenues ofcommunication between staff members of UCP and thefamilies served.

It was also hoped that as a result of intensive client-staffcontact, a subsequent closer relationship between agencypersonnel and parents would develop and continue after theSu mmer Family Conference ended. Recreationalopportunities for parents also had to be provided. In orderto develop trust and confidence in those with whom theparents would meet in educational and counseling situa-tions, it was decided that the professional staff of theagency would provide most of these services.

II. The Problem of Cerebral Palsya. Definition

Cerebral Palsy presents a problem or series of problemsfar more complicated than those found in most othergroups of physically disabled individuals. Because of theintimate relation of cerebral palsy to the central andperipheral nervous system, it is relatively commonplace inpeople with this condition to find physical and mentalanomalies other than just the neuromuscular involvement.Associated disabilities may take the form of visual, auditoryand speech impairment, mental retardation, seizures, disturbances of perceptual-motor function, and others.

This complexity is compounded by the fact thatauthorities do not entirely agree on a definition of cerebral

For detailed definitions see theliterature on Cerebral Palsy.

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palsy. In some instances it is viewed as an orthopedicproblem, while others see it from a pediatric, neurologicalor psychological point of view. One definition says that"Cerebral palsy is a condition characterized by paralysis,weakness, incoordination or other aberration of motorfunction due to pathology of the motor control centers ofthe brain. In this definition, cerebral palsy is viewed solelyin terms of its physical components.

A still more limited definition is one where cerebralpalsy is viewed as a condition in which interferences withthe control of the motor system arise as a result of lesionsoccurring from birth trauma (only one of the causes ofcerebral palsy.)

As these definitions seem much too limited for thepurpose of this study; a more practical definition whichviews cerebral palsy as one component of a broaderbrain-damage syndrome will be elaborated and proposed.The definition which we will accept and use is that cerebralpalsy is a result of a brain insult which leads to neuro-muscular dysfunction with probable associated organic,psychological, intellectual and other impairments. Accom-panying or secondary impairments may be evidenced inperceptual difficulties and/or retardation. They invariablyinvolve social implications and may cause educationalproblems affecting the impaired child and his entire family.

b. Medical ProblemThere is no known cure for cerebral palsy at this time,however medical intervention may reduce some of itseffects. Physi cal therapy can help persons with cerebalpalsy to make better use of their existing physical abilities.Occupational therapy can train the palsied to use theirlimited bodies in activities of daily living. Proper medicalmanagement can help an afflicted person avoid latercomplications and secondary physical problems. Speechtherapy can improve communication skills.

c. Learning ProblemInherent in the concept of brain dysfunction is theprobability of learning disorders. Visual, auditory andtactile perception may be impaired. This requires intensiveretraining before academic learning can be attempted.

d. Psychological and Social ProblemsBeing handicapped and viewed as "different" from othershas a profound effect on the emotional developmen of aperson. Handicapped individuals are often not accepted bythe non-handicapped. Social attitudes toward deviant

_appearance and behavior are generally expressed in suspi-

cion, rejection, fear of contagion and at times just plaincuriosity, These attitudes all too often comprise the dailyexperiences of the handicapped child and his family. Theyoften enhance the family's feeling of worthlessness, shameand guilt and create familial as well as individual emotionalconflicts.

As a result of these emotional and social components ofcerebral palsy, parents are generally in a state of confusionand look for concrete "prescriptions" as to the "what,""when," "why," and "how". Extremes of parental am--tudes are often noticed in the child's early life. Someparents expect quick cures for their handicapped children,while others appear to have given up all hope. Eventually,most parents reach the point where they see the lack ofphysical and mental development in their child and aphysician's advice is sought.

What parents do after the first visit to the doctor variesgreatly and depends on the doctor. A parent may have thegood fortune of being directed to a medical authority in thefield of cerebral palsy (Appendix #1).

During their search for help, with its mcunting costs andrepeated disappointments, parents develop various atti-tudes. In general, these vary from an aggressive bitterness tosubmissive sentimentality. Parents often report their firstemotional response upon learning that they have a childwith cerebral palsy as disappointment or guilt. Manyconsider such terms inadequate to describe how they reallyfeel. No question is more frequently uttered than, "Whydid it happen to me?". Heredity and prenatal environ-mental causes are commonly discussed. Any abnormality orvariation from the usual course of development observed ina member of the families concerned may be accepted asevidence of inheritance of the condition: "People tell youcerebral palsy is inherited. When that happened to me, Iwanted to throw it up to my husband and blame him. I alsothought 'Am I guilty?'" unjustified feelings of guilt arecommon: "My own neglect has caused this; there is

something I did or failed to do", Familial conflictssometimes arise. Often parents find it difficult tt put theirtrue feelings into words.

Parents encounter much difficulty in attempting to carryout professional recommendations for their child. There aremany things that a person with cerebral palsy cannot do forhimself and may even be unable to do with assistance.Responsibility then falls to the parents for day-to-day care,The cerebral palsied person must be fed, dressed, bathedand toileted. While a child is young and easy to handle, this

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is a small problem. But as he grows and continues to beincapable of performing these acts for himself, conflictsarise. The problem is obviously more serious than just howto manage the handicapped child and how much to requireof him. The total organization of the home is involved.Uncertainty creeps in and contributes to increased tensions.The uncertainty of the outcome of all the efforts on behalfof the child also enters the thinking of parents.

All parents have plans for their children. Some or all ofthe following attainments rank high in parental estimation:acceptance in the school system and success in it; admissionto the preferred religious community; success in industry,business or a profession; and the establishment of a home.A few cerebral palsied children will attain all major goals;many will attain none. For the majority there will be muchfailure and some limited success. The basic motives of allparents and growing children meet some measure offrustration but this is greatly increased for the handicapped.Increasing disappointments may in some cases draw a fatherand a mother together, more often, the opposite effect isreported. Parents blame one another as well as themselves.

Overprotection and infantilization of the cerebral palsiedchild often interfere with his progress. Without the parentbeing fully aware of what is happening, the undue attentiongiven a child masks growing parentive resentment. All thethings that are done to the rejected child are too wellknown to repeat here. What happens to any child who isnot wanted in the home, happens to the cerebral palsiedchild.

Counseling and education of the parents by teachers,psychologists, and social workers are designed to clarify andhelp parents cope with some of the above problems. Manyof the recommendations professional people make involveadded responsibilities for parents who already have toomuch to do. Some lose confidence in the doctor orpsychologist because the results of treatment or counselingare meager. Parents need confidence in the doctor, psychol-ogist, teacher and others involved in the rehabilitation oftheir child. This confidence can only come through asustained relationship, and a "learning and helping to-gether".

III. Preparationsa. Format of the Summer Family Conference

The following questions were posed:1. Can enough parents, especially the inner-city parents,

be interested in this program?

2. Can the Conference be timed so that most of thequalified agency staff will be available?

3. Can children successfully spend parts of each dayaway from their parents?

A. Can meals become social, communal and unifyingopportunities?

5. Can education and counseling components be de-veloped so as to aid handicapped children throughtheir parents?

The following program outline attempted to provide anopportunity to answer these questions.

Each day of the Conference would be divided into threeparts. The morning would be allocated for an educationalcomponent, the afternoon for a counseling component andthe late afternoon and evening would be set aside forrecreation. This recreation component, in addition toaffording clients an opportunity for relaxation, wouldattempt to bring families and staff together in a congenial,informal and personal manner to meet others with similarproblems. Pervading the entire program would be theavailability of staff members. These members would includethe administrative staff, psychologists, teachers, socialworkers, speech therapists and several persons who couldspeak Spanish to converse with and translate for theSpanish-speaking families.

All these staff members were to make themselvesavailable during the formal session and during recreationand relaxation periods. The intent of this exposure was toenable parents and older siblings to think of the staff aspeople to whom they could turn for counsel and informa-tion concerning their problems. In order to counsel andinform parents in a short intensive residential session theyhad to be free from worry about their children. Therefore,arrangements were made to place all children, handicappedand non-handicapped, in a day camp situation within thecontext of the Summer Family Conference. This day campwas to become the responsibility of the education andrecreation staff of UCP (Appendix #3.)b. Criteria for Selecting FamiliesCriteria for selecting families which would be invited toparticipate in the Summer Family Conference were thefollowing:

1. The family must have had a pre-school age child inone of the programs sponsored by UCP at the time ofthe Conference.

2. This child had to be accompanied by one or more of

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his parents. If either parent was not available, thechild had to be accompanied by someone appointedby the parents.

3. If the child had lived with a guardian or in a fosterhome, someone from the place where the childresided was acceptable.

Prior to the actual occurrence of the Summer FamilyConference, it was hoped that every contacted familywould attend. It was anticipated that some resistance wouldbe encountered from inner city multi-problem families.Each family was encouraged to bring all of the membersresiding in the household; i.e., all siblings and whereapplicable, grandparents. Much effort was spent on en-couraging families to participate.

c. Conference SitaEarly in January of 1970, a systematic search was initiatedfor a suitable location for the Summer Family Conference.Thanks to the diligent efforts of the agency's camp staff,Monmouth College was suggested, visited and approved asan excellent location.

The college was chosen for its park-like surroundings,smooth, even walks, spacious living arrangements, friendly,cooperative staff, many meeting rooms and several audi-toriums, excellent recreation facilities, and beautiful mainhou e (which had, at one time, been the summer WhiteHouse of President Wilson). The facilities included anOlympic size pool and fine New Jersey beaches within afew miles of campus.

d. Preparation with ParentsPreparing parents for their Involvement in this experienceconsisted of the following:

1. personally contacting each of the parents2. making arrangements for family living quarters3. establishing transportation schedules4. arranging babysitting facilities and staff.After deciding upon Monmouth College as a suitable site

for the Summer Family Conference, letters of invitationwere sent to the families of handicapped pre-schoolchildren involved in the agency programs (Appendices#4,4a).

The response from this initial contact was sparse. In acasual conversation with one of the client families, it wasdiscovered that the date on which families were expected toreply came too early for families to make decisionsconcet. ing their vacation plans. Therefore, a second invita-tion was sent and in a relatively short time many replies

were received (Appendix #5). A great many of theenrollment forms were inadequately filled out and it wafdecided that follow-ups should be done by phone and visitsto the homes by members of the social work department.Each family was, therefore, visited individually and advisedon the details of the camp.

Out of 36 eligible families, 24 anticipated coming at onetime during the spring of 1970. Of these 24, 18 familieseventually attended. (It should be noted that all correspon-dence was translated into Spanish for Spanish sneakingfamilies.) As soon as acceptance replies were received,acknowledgements were mailed thanking ead- family for itsreply and assuring it that it would hear from the agencyagain shortly (Appendix #6). At the end of July, "familyinformation meetings" were conducted in each of the fourboroughs (Appendix #7),

At these meetings, the Project Director described theintent of the program, the components of the program(education, counseling and recreation) and the practicaldetails such as housing, clothes, safety measures, baby-sitting, etc. About two thirds of the families attended thesemeetings. Those who did not attend were contactedindividually. A final letter explaining procedures was sentshortly before the start of the conference (Appendix 4:8),e. TransportationTransportation to Monmouth College would be provided,on a group basis, for all families by the agency's transporta-tion department. United Cerebral Palsy buses would pickup families at their homes and drive them directly to WestLong Branch, New Jersey. Large families would be accom-panied by a United Cerebral Palsy staff member. In anattempt to mitigate against unforeseen difficulties, one staffmember would be selected to ;main at the central officeand to facilitate communication between families, busdrivers, and the staff at Monmouth College. (Fortunately,no "hitch" occurred and the precaution proved unneces-sary.)

f. Preparation with UCP StaffSeveral visits were made by selected agency staff membersto make sure the location was suitable for our needs priorto finalizing the arrangements. At United Cerebral Palsy,meetings were held to plan for the content and practicalarrangements of this new and rather complex undertaking.As a result of these meetings, at which various disciplinescontributed their thinking, the total plan for the conferenceprogram was devised and made operational. This plan was

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then presented to the Early Education Advisory Commit.tee. The suggestions and comments of this Committee wereiincorporated into the final plan. Letters were sent tomembers of the Board of Directors of United Cerebral Palsyof New York City, Inc. and to other interested parties(Appendix #9), inviting them to visit the Summer FamilyConference while it was in session. An invitation was alsosent to the staff of the Bureau of Education for theHandicapped, Department of Health, Education, and Wel-fare in Washington, D. C.

At the staff meetings, the roles and responsibilite) ofthe various staff participants and specific assignments weremade. The Director of Recreation was given the task oforganizing the day camp activities for older children (over 6years of age), whoe the teachers of the Early EducationProject planned tre day camp activities for the youngerchildren.

g. Planning with Monmouth College StaffDuring the preliminary visits to the college, arrangementswere made with the officials of that institution for thebuildings that would be available for use. The meetingrooms were chosen, arrangements were made for the use ofthe pool, and lifeguard attendance at the pool was insured.Mealtime schedules were prepared and menus selected. Thegymnasium hours were agreed upon and the indoor andoutdoor athletic areas assigned.

Audio-visual equipment was graciously loaned to theConference, as were loudspeakers for our outdoor activities.Arrangements were made for a coffee hour each evening toprovide an evening snack for children and parents and toenhance the social portion of the program. It was decidedthat meals would be served cafeteria style in the studentdining room.

Prior to the actual conference, key staff members weregiven a detailed tour of the campus, so that they would, ata later date, be able to familiarize other staff personnel withthe facilities.

A nurse was to be in attendance on the campus from9:00 A.M. to 5:00 P.M. daily and a doctor was to beavailable. The local medical center would be made aware ofour stay and of the special needs of the conferencemembers. Security guards patrolled the campus day andnight. The agency expanded its insurance coverage toinclude the Summer Family Conference. Street-crossingguards would be assigned to assist families to move againstheavy highway traffic.

IV. The Daily Programa. Overview

Each family would breakfast together as a unit and thentake its children to a designated place to meet the campcounselors. Some staff members would be assigned to helplarge families during breakfast. While all children would bein the care of "camp counselors" (composed of theagency's teaching and recreational staff), the adults wouldbe invited to attend the morning education sessions. Thetopics chosen were, "A Medical Examination," "Educationof Children with Cerebral Palsy," "Home Management,"and "Life-long Planning with and for Cerebral PalsiedPeople." It was decided that each of these topics would bepresented in the form of a demonstration with as muchaudience participation as possible. These meetings wereplanned to terminate at approximately 11:30 A.M. so timewould be available to prepare for lunch. Lunch would notbe a family meal. The children would eat with theircounselors, and the parents with the rest of the staff.The afternoon sessions entitled, "What's Your Problem andWho to See" were planned to be group discussions focusingon some of the questions generally asked by parents, andthe topics to be raised from a questionnaire which theparents would be asked to complete. These sessions wouldbe led by a team consisting of a social worker, apsychologist and a teacher. During this part of the program,parents would be grouped according to the location of theUnited Cerebral Palsy center their child attended. Staffmembers were to be assigned on the same basis in the hopethat what would be initiated here would carry over andcontinue beyond the end of the conference.The late afternoon and evening were allocated for recrea-tion and relaxation. This part of the day pa.ents andchildren would spend together, Families could use the pool,go to the beach, rest, chat, walk in the beautiful gardensaround the college, or amuse themselves as they desired.

b Living arrangementsFamilies wou,d live in the dormitory buildings of thecollege, which were ideally suited for the purpose. Eachfamily would have a small suite consisting of 2 or 4 smallbedrooms, a bathroom and a sitting area. Bedding andlinens would be provided by Monmouth College, cribs andrubber sheets by UCP. In the two student buildings, hsedby the families, a key staff member would be designate:I as"housemother" and assigned a first floor room in case ofemergency. There was a refrigerator in each building, which

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would be filled with milk and snacks each day. Washingmachines and dryers were also standard equipment. Themajority of the agency staff would live in a third buildingwith similar accommodations The college was nearlyempty of students during the time of the Conference sothat there was plenty of space available.During the planning stages, the following decisions concern-ing living arrangements and daily programs were arrived at:the living accommodations should be so assigned thatfamilies from different bor.rughs and of different social andeconomic backgrounds could mingle. For the counselingsessions, however, families should be grouped according tothe UCP centers in which their children spent their schoolyear. Families which would need wheelchairs should begiven ground floor suites, while families with many olderchildren were given top floor suites (two flights up).Children of staff members would be invited to join theirparents and integrate with the day camp program. It wasalso decided to mix the handicapped children with non--handicapped brothers and sisters of similar age groupsduring the day.Dinner would be, once again, a family time with staffassisting the larger family units. After dinner, programswere planned for adults. They would include small socialgatherings, film presentations, swimming at the pool, andlive entertainment.

c. Babysitting arrangementsBabysitting would be provided each evening so that parentscould feel free to enjoy the social activities of the programas well as each other's company. They could meet withcounseling staff if they wished or they could participate inthe planned evening entertainment without worrying abouttheir young children. All agency staff members were toparticipate, on a rotating schedule, so that each buildingwould have several "sitters" and even the smallest childcould be left without parental fears.

d. Work schedule for staffThe work schedule for the staff was planned as follows:

1. The children's staff was to work from breakfast at8:00 A.M. until 3:30 P.M. and resume their duties at7:00 P.M. until 9:00 P.M. One evening of babysittingfrom 9 11 P.M. and an occasional staff meetingbefore breakfast would be included.

2. The adult's staff was to be on duty from breakfastuntil 1:30 P.M., except for those leading the smaligroup discussions, who were to work until 3:30 P.M.,

This staff would then be with the families as neededuntil 7:00 P.M. and occasionally spend a wholeevening with a particular person. This group wouldalso spend one evening from 9:00 P.M. to 11:00 P.M.as babysitters.

e. Day camp schedulesDay camp schedules for the younger children were devel-oped by the Early Education Project teachers. Day campprograms for the older children were developed by theagency recreation division. In both program segments, plansproviding for rainy days (indoor sports and games for ages 5weeks to 16 years) were included. Some of the materialsand equipment, such as films, wading pools, arts and craftsmaterials, books, and games were sent to the camp sitebefore the opening day and stored until needed.f. Evaluation ProceduresAs a final preparation, an evaluation interview form wasdeveloped. This form (Appendix #10), was to be administered on an individual basis during the last day of theConference. Its aim was to supply information to determinewhether, and to what extent the conference objectives wereachieved, and what value the Conference did have for theparents of the handicapped preschool population., Inaddition to this long questionnaire, we also developed twoshort questionnaires (Appendix #11), which were to beused for content development of the afternoon counselingsessions. Preparations were also made to film and tape someof the spontaneous reactions of parents and older siblingsto the Conference. Verbatim samples of the tapings areattached (Append x #12).

V. The Conferencea. The First Day

The first day began with the early arrival of agencypersonnel. They checked the facilities, made final prepara-tions and put the name of each family on their assignedquarters (Appendix #13),Parents and children began arriving in the early afternoon.Most of the families came by United Cerebral Palsytransportation, but several families came in their own cars.The first afternoon and evening was primarily devoted tothe following:

1. assignment of rooms2. a tour of the college grounds and facilities3. an introductory meeting during dinner4. a coffee hour with agency personnel and invited

guests.

Assignment of roomsThe room arrangements were assigned in family units asdescribed earlier. Each family was put into the care of astaff member, whe'e assignment was to help it find itsaccommodati -r unpack, and see to its comfort andimmediate needs. -hese arrangements, planned in detailwell in advanc,e, went smoothly and families settled inquickly and with a minimum of discomfort.Tour of the campusTours of the college and its grounds were included tofamiliarize clients and families with the campus facilities.Each family was shown the meeting areas, the dining room,the swimming pool and gymnasium, the nui:e's office andthe staff (emergency) accommooa:icns in its building. Theywere familiarized with the locations of the appliances intheir area and the use of these appliances. These tours wereconducted individually by a staff member for each family.

Introductory meeting and first dinnerAt the introductory meeting and dinner, families wereofficially welcomed to the Summer Family Conference bythe Executive Director of United Cerebral Palsy of NewYork City, Inc. and staff members were introduced. Thedaily schedule was presented and explained. A question andanswer period followed during which further details weredisc,.ssed.

Coffee HourAfter the younger children had been put to bed by theirparents and the babysitting schedule put into effect, adultsmet for coffee and a get-acquainted session. At thisinformal session, they were able to meet and talk withmembers of the Board of Directors of United Cerebral Palsyof New York City, Inc. During this time, the older childrenwere afforded the opportunity of meeting the recreationstaff as well as each other. Toward the close of the evening,a film was shown for those who were interested.

Through the cou rtesy of ABC-TV, the Conference receivedthe loan of several films and was able to show a film everyevening. As most clients are accustomed to spendingrecreation time around their TV-sets, and as no commercialentertainment was available at Monmouth College, it wasdecided that movies would serve the purpose. It wasdiscovered that they had a double advantage. On the onehand, they were the form of entertainment most similar toTV, while on the other hand, they constituted a groupactivity which brough clients closer together. Coffee andcake were served prior to each movie in order to enhance

and personalize the atmosphere, and to create a congenialsocial situation.

b. Subsequent DaysEach of the next four days was basically divided into thefollowing parts:

1. morning educational session2. afternoon counseling session3. evening recreational session.

These sessions comprised the core of the Summer FamilyConference.

The Morning SessionThe time between 9:30 A.M. and 11:30 A.M. was devotedto parent education. Each of the four meetings plannedaddressed itself to a different aspect of the cerebral palsyproblem. These meetings always took the form of ademonstration rather than a lecture, The sequence wasfrom medical evaluation to educational methods andmaterials to home management and closed with a session onplanning.

Demonstration of Medical EvaluationIn order to give parents more practical insight into theproblems of cerebral palsy, a pediatric neurologist pre-sented a demonstration of a typical physical examination ofa cerebral palsied child. The immediate purpose of this wasto provide a visual illustration of the actual procedures andmedical equipment used in the diagnosis and treatment ofthe cerebral palsied child. Its long -range goal was to showthat the doctor's role is not limited to an initial contact,but instead must be continuous and ongoing. Cerebral palsyis primarily a medical condition which can deteriorate ifmedical supervision is not included on a regular basis in thelife of an individual with cerebral palsy.

Demonstration of Education of the Cerebral Palsied ChildIn order to enable parents to have a clearer understandingof the learning problems that often accompany a braindysfunction, educational methods and materials were dem-onstrated by an educational specialist from UCP. It wasexplained during this presentation how parents can modifyand apply some of the very same methods and materials forhome use and thereby reinforce the learning that is initiatedin the educational centers. Stress was placed on all thethings parents can do at home, or from home, to broadenand enrich the learning experiences of their children. Thepresentation was followed by a discussion period, duringwhich time was set aside for parents to handle thedemonstrated materials and to examine them more closely.

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Home Management Demonstra2ionThis presentation was designed to impart to parents safe,simple and inexpensive ways of manag; children withsevere physical problems at home. Devices .,ar carrying andfeeding and bathing children were discussed and demon-strated. Methods of positioning children to enable them touse their available facilities to their best advantage wereexplored. Many self help devices were shown with instruc-tions on how these could be made at home. Improvementsof commercial wheelchairs were also shown. Following thepresentation, time was set aside for parents to ask specificquestions and to handle the demonstrated materials. Thissession was led by the Director of Program Services of theNew York State office of the Cerebral Palsy Associations.

Life-long Planning for the Cerebral Palsied PersonThe final morning session was devoted to the problem oflife-long planning for the cerebral palsied person. In orderto inform parents end reassure them that agency serviceswould be available on an on-going basis for as long as theirneeds persist, the long range goals and plans as well as thephilosophy of the agency were discussed. A series of slidesshowing adult cerebral palsied people in various phases oftraining and employment was shown, as well as slides onhow adult cerebral palsied people function in varioussituations. One additional goal of this program segment wasto show parents of young cerebral palsied children thepossibilities of physical, educational anc social improve-ment, which continuous work with their children mightachieve.

The medical problems, the learning problems and themanagement problems of the handicapped child werepresented as being closely related and as constituting thecore of the problem of life-long planning for the cerebralpalsied. This presentation was made by the ExecutiveDirector of United Cerebral Palsy of New York City, Inc.The Afternoon SessionsThe time from 1:30 to 3:30 P.M. was devoted to groupsessions. Three groups were established with each being ledby a team composed of a psychologist, a social worker, andan educator.

The pre-conference questionnaire completed by theparents was designed to find a focus for these sessions. Itwas surprising to discover that 'rich group quickly foundtopics which members could address themselves to. Theybecame very involved in these topics as well as with eachother. While each group developed differently, all the

S

groups were quickly able to discuss problems withoutHiving on guidance of the group leaders. The topicsdiscussed ranged over a broad terrain, to include frustrationover medical information 'ne hurt experiencedthrough insensitive strar questio01 of how toexplain to the child that different from r..ost others.

The title, "What's your problem, who to see" wasoriginally chosen because it was thought that the termcounseling" might be misinterpreted by clients. The

procedures and content varied according to the participantsof each group.

Two other sessions that were held in the early eveninghours appeared to have an important impact on the parents.The first was a session with the "normal" siblings of thehandicapped children. It was called, "Brothers and Sis-ters How Do The), Feel?" During this session', led by apsychologist, the youngsters were invited to discuss some ofthe difficulties they encountered in living in a householdwith a handicapped child. The following evening, a meetingwas held with parents to bring to them some of the feelingsof the non-handicapped children in their family and todiscuss with them their own emotions and actions regardingtheir non-handicapped children.The evening sessionAside from the described evening recreation facilities andfilms, there were two delightful evening entertainments.One was a performance by a Boy Scout troop fromMonmouth County of authentic Indian dances in authenticIndian costumes, and the other, a talent show arranged by agroup of well known singers in which the older childrenparticipated.

Late in the evening an unplanned activity seemed tospontaneously arise. Families and staff mixed over pizzas,and talked until all hours of the morning. New friendshipswere formed and new ideas exchanged in an informal,parent-sponsored activity.

VI. Evaluationa. The Questionnaires

The techniques selected to evaluate the conference objec-tives took the form of an interview of each parent based ona questionnaire. This supplied information from those whomight have had difficulties in expressing themselves inwriting and yet provide consistency in the questions.

The questions were:1. Did intensive counseling away from the cares of

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home and in a rely r.....osphere help parents facesome of their feelings and help them cope with them?

2. Did the environment chosen allow parents to relax?3. Had the "educational" component helped them

understand better the problems they were nowexperiencing and those they would be expectinglater?

4. Had meetings between parents and Social WorkersPsychologists in an informal contact built a relation-

ship which might continue?5. Had meeting others with similar problems made a

difference?6. Had the conference met the expectations of those

who participated?!n consultation with the Advisory Committee and the

Psychological Consultant to this agency, a questionnairewas developed which was hoped to give some answers.Parents were told that an interview to find out how theyfelt about the Conference would take place. Staff was givena verbal explanation and written instructions. (See Appen-dix #10.)b. General Findings

OVERALL FEELING ABOUT THE CONFERENCETo the question, "Did you like this vacation?" every answerbut one was positive. For many of the families this wasth inly chance to get away from the city all summer.When asked what they liked the most about the vacation,many replied that they enjoyed the comradeship of theother families and found this interaction was educational.One father mentioned that the experience had helped himto discover how his other two children really felt towardtheir handicappej brother, A majority of the parents saidthat they liked the demonstrations or the afternoon groupsessions.

The major objection about 4"e vacation as a whole wasto the tight schedule. Most people (including the staff) feltthat there were not enough bre,:ks and that the morningand afternoon meetings were ton :,:ose together.

Sleeping ArrangementsExcept for someone who complained about "the lack of atelevision," everyone was extremely pleased with theaccommodations. Many commented tat they were quitepleased with the family-style arrangement of the sleepingquarters. Separate rooms for pareAts and children were abonus to those who live in more cramped quarters at home.The major (and justifiable) complaint was that the air

conditioning was too cold. Some families also mentionedthat they needed more information on how to obtaintowels and other supplies.

FoodOn the whole, those attending the conference thought thefood was good. The only objections were to certain dishesthat were served. One mother reflected the sentiments of allthe women present. When asked what she liked best aboutthe food, she replied, "I didn't have to cook it."

EntertainmentThe most popular feature of the entertainment was thechildren's talent show. The movies and the coffee hourwere also favorites. Several parents were grat^ful for thepool for their children. The only complaints concerned themovies. Some parents felt they were too juvenile. Othershad to leave before the movies were over since they lastedpast 11 P.M., when the children were released from thebabysitters. On the whole, however, reactions to theentertainment were extremely favorable.

DemonstrationsReactions to the demonstrations were mixed, according tothe particular needs of the parent being interviewed.Almost all parents found the "Education" and "HomeManagement" demonstrations useful because they con-tained concrete information on how to care for their child'sphysical and intellectual needs. For instance, one motherwho had desired to teach her child at home commented, "Ilearned a lot about things I didn't understand before howto teach language, numbers, letters." The demonstrationshad more than just practical value for some parents. A fewparents received a certain sense of confidence throughknowing how to handle certain problems: "I felt I wasn'talone in that the problem of my child wasn't so unusual."On the other hand, some parents complained that thedemonstrations were too long or that certain ones were notuseful for them.

Children's ActivitiesAll parents interviewed were very pleased w:th the chil-dren's activities. There were almost no complaints. Onemother said her children had such a good time that theydidn't want to go home. One of the fathers was especiallyglad that his child who was not handicapped had a chanceto meet with other normal children with handicappedbrothers and sisters.

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Afternoon Group Sessions

The afternoon group sessions were very well accepted. Mostparents felt they were a valuable learning experience. Manyof the parents had never been able to discuss their familyproblems with anyone else because they did not knowanyone else in their situation. As one parent expressed it:"I found out how much we have in common. It alsobrought out some feelings you never really f!.:.,,uss withother people," Another mother said, "I like to talk aboutmy child because I do not understand her sometime." Theparents also benefited from tips on child care that otherparents had to offer, There were very few complaints aboutthese meetings. Some felt thai they were too close to themorning meetings and that they should be held insiderather than outside.

Did the Vacation Help?

All parents agreed that the vacation helped them in someway. Most of the parents appreciated being relieved ofresponsibility for their children for a short time each dayMany parents said they benefited from just knowing thatother people had the same problems. Two comments by theparents best express the two major themes of the answer tothis question: "I relaxed no cooking, no washing, nocleaning the house." "I saw how other families love theirhandicapped children just as much as I love my child."

Did Feelings about the Child Change?

Over half of the parents interviewed said their feelingsabout their handicapped child did not change. Even thoughalmost all of them had previously said that they had learnedfrom the demonstrations, group sessions, and interactionwith similar families, no one saw this learning as a change infeelings. Perhaps they felt that saying their feelings hadchanged would indicate that they were unsure about theirchildren. One parent quite honestly said that his feelingshadn't changed because "the problem hasn't changed."Those who said their feelings had changed gave variedreasons, such as the information from the demonstrations,new insights from the group sessions, and encouragementfrom other parents handling similar problems.

Suggested Changes

The only suggestion found consistently in all of theit views was that the program be changed, mainly toallow for more free time and longer breaks. Most peoplewer-. sr*Cea with the actual content of the program.

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c. Tape Recordings

In addition to the formal evaluation instrument, informalinterviews were taped by one of the social workers. On tapesome parents remarked that the summer conference was themost practical and helpful way of learning about their childand his needs. Others reported that the result was not somuch of a practical nature; they gained the knowledge thatthere were others to whom they could talk and whounderstood. Many parents noticed that they were reassuredby the education and counseling sessions. Others reportedthat they felt something akin to relief in meeting otherfamilies with similar problems. They felt less alone thanbefore. All described, as a most pleasant part, the fact thatfor long periods of each day their children were cared forby others wham they could trust, thus (saving them free toattend the sessions without this responsibility. Someparents expressed a wish to have some periods withoutsessions and without children.

One of the tangible results was the formation of aWomen's Division on Staten Island. This was one of theboroughs in which no Women's Division had existed priorto the Summer Family Conference.

d. Staff EvaluationAlthough the staff worked long and strenuous hours, eachmember felt excited and elated about the congenialatmosphere of the Conference. They were pleased withtheir contact and communication (dialogue) with the clientparticipants. One staff member brought her husband alongwho worked as hard as any paid staff member.

Staff also expressed appreciation of some unexpectedbenefits:- they met and got to know members from otherboroughs. They came to know members from otherdisciplines better than they usually do during the workingyear. Psychologists and social workers, teachers and thera-pists learned to appreciate each other's skills. Typical of thegenial atmosphere of the evening babysitting periods wasthe sight of the Executive Director of the agency giving a5-week old baby his bottle while the mother enjoyed amovie in another building. All staff members expressedsatisfaction about the way the day camp had functionedand how easily all staff members had cooperated with eachother.

It was felt that living together provided much moreintimate and personal interaction between all participantsthan any groups or meetings hed done heretofore.

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e. Post Conference Data

In January 1971, the Project Director asked for feedbackfrom Social Workers in each borough. Here are thecomments:

One family has cooperated with the Social Worker inregular counseling sessions since the Conference. Thisfamily refused to cooperate before, because the fatherexpressed his discomfort in knowing that the SocialWorker knew intimate details of his life. He saw theSocial Worker as an intrusive person, while the mothersaw her as a supportive person. Yet this same family hasasked for information cn family summer camps. Themother now meets with the Social Worker for regularcounseling.

One mother reported that she has become much moreaware of her role as a mother. She takes care to exoresslove for her children more overtly, She to es car* thatthe food she provides is more balanced and has asl. -I forinformation about nutrition. She meets her schoolchildren with z friendly welcome (something she had notdone before), cuddles the toddler, and for the first tir-rin seven pregnancies goes to a pre-natal clieIe. SI

herself attributes these changes to the Conference, evethough she was one of those IA° felt there had been"too much satin".

One of the staff members at camp has taken a nin:year old boy out every three weeks ever since the boywas in his group at the day camp. There is no father inthat family and the "big brother" relationship givesmuch satisfaction to both,

VII. Some Unexpected HighlightsThere were 18 families, comprising 34 children and adults,as well as .35 staff members at Monmouth College. Therewas not one key available to any of the bedroom suites, yetnothing was taken or even touched.

A seven year old boy announced proudly that he liked itso much at the college that he would "work hard at school"and return as a student.

Children of one family were reported to have cried forseveral days after they had returned to their tenementlodgings. Many new friendships developed among mothersof each center.

VIII. The CostThe total cost of the conference was for food andtransportation and an honorarium for speakers. Staff on ayearly salary were paid only for transportation cost. Use ofall the college facilities was included in the overall fee.

Other expenses included a lifeguard at hours not schedulecby the coilege, rental of crios, supplementary food forsnacks in mornings and evenings, and an entrance fee to -.1-,ebeach for adults. The total cost was about MOO.

Summer Family Conference, 1970 Statistics

TOTAL: 129 peopleFamilies of handicapped 13Handicapped children under 6 years 18

Brothers and sisters under 15 years 41

Brothers and sisters over 15 years 4Grandmothers 2Mothers 1",

Fathers 11 Families from Manhattan 0(All 5 Manhattan families cancelled for most validreasons.)

Families from Bronx 4Families from Brooklyn 5Families from Staten Island 9Negro Families 7SpanishAmerican Family 1

Italian Families 3Staff Members 35

X. Recommendations For Future Conferences

At the beginning of September, a staff meeting was heldand the following recommendations were made.

1. That the Summer Family Conference be an annualevent of United Cerebral Palsy.

2. That more staff be provided for the children'sprogram at sJbseguent conferences so as to allowparents more time without their children and yet notput greater burden on staff.

3. That all the materials used during the dmonstrationsover the 5 days be exhibited so that oa-ents couldview and handle these at their leisure.

4. That the long drid cumbersome meal service throughfamily style eating (bowls of food at each table), beimproved.

5. That the New York City Board of Education,through its Bureau for the Handicapped, be involvedin the Conference so that bureau staff can becomefamiliar with this form of parent education andcounseling.

6. That a reunion be held of all those who attend theConference in order to better evaluate what lastingeffect the conference may have had on attitudes andbehaviors. (This reunion did not take place due todifficulties of living in a large city.)

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011111111011111P

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Summer Family Conference Year TwoI. Preparations

After the last goodbyes had been waved to departingfamilies following the First Summer Family Conference lastyear, there was no doubt in the minds of those who hadparticipated that there would be a Second Conference thefollowing year. Thus, when UCP staff members convenedfor the first of several meeting on the Second Conference,the initial item of discussion was the number of familiesthat would Vrticipate. The general "eel'ig, tinged withsome uncertainty, was that we should have about 40families. Some of the staff, includin( the Director of EarliEducation, had concern about the lar e number of childrenthis would entail and about the re:u ting lack of intimacyamong participating families. Howlv I. it was decided togive it a try. The place chosen wa the same as in theprevious year Monmouth College, West Long Branch,New Jersey. By now, within the agency, staff were talkingabout the '' Monmouth Conference" ratter than the Sum-mer Family Conference, anyway'. Letters were sent out toall families who fell within the following guidelines ofeligibility. 1) The family has a child in the center aged 6years or under. 2) The child is eligible for return for atleast part of the following school year. 3) If a family hadparticipated in the first conference and was still eligible,this would be acceptable (Appendix #14). 4) If there wereopenings after the centers within the agency had offeredparticipation to their eligible families, other sources couldbe approached, such as the Board of Education, Center forMultihandicapped Children. It was also decided that thesocial workers of each center, that is Manhattan, Bronx,Brooklyn and Staten Island, would be responsible forcontacting and enrolling families (Appendix #14). TheParent Activity Coordinator would then coordinate theinformation about each family and make all necessary

arrangements. One of the assistant directors of the agencywould become the Dean of the Conference, responsible forrunning the Conference it its second year, with the Directorof Early Education as resource person and consultant.

To everyone's delight and apprehension, enrollmentscame in very fast, so that within a few weeks 56 familieshad made application. By the week prior to the actualconference date this had dwindled to 42 families, with 39eventually actually participating. All who had to withdrawhad valid reasons, such as hospitalization of a child, moving,etc. The Evaluator of the Early Education Project, theProject Director and the psychological consultant arranged

for a new kind of evaluation. (The form is enclosed asAppendix #15.) The objective was to discover if an

intensive five day conference would make an impact on thefamily of the handicapped child with respect to its realisticappraisal of the child's potential.

A letter inviting parents to a preparatory meeting in eachcenter was mailed (Appendix #16). All centers were visitedto explain that the conference would not just be a freeholiday Lut an opportunity for parents to participate in theeducational and counseling sessions offered through UCPand that their children would be well taken care of duringthese periods set aside for parents. It was also explainedhow families would live, what their day would be like andwho would be participating beside the families (socialworkers, teachers, psychologists, etc.).

The forms for evaluating the Conference (Appendix#15), were filled out as a pre-conference paper and wouldbe filled out again at the end of the Conference. All thiswas carefully explained. Furthermore an elaborate methodof anonymity had been developed, which was also ex-plained. (Each family was to put its address on the insideflap of an envelope. After the post evaluation form hadbeen filled out, this flap with the address on it was to beremnved.)

The Parent Activity Coordinator, Evaluator and theconsultants to the Conference visited all centers, explainedall procedures, and answered questions. Other preparatoryprocedures followed format of the first year's Conference.Finally, each family received a printed list of reminders anda phone number to call for pick-up time (Appendix #17).Families were transported from their homes to the Manhat-tan Center of United Cerebral Palsy and from there byair-conditioned buses to Monmouth College. Wheelchairs,and cribs as well as the play materials, films, cameras andvideo taping equipment were sent to Monmouth by UCPtransportation. Staff either traveled on their own, accom-panied the families, or shared transportation with eachother. In addition to staff employed by the agency in itsyear around programs, there were SWEAT* students andseveral staff husband volunteers.

A few program changes from the year before were made.Even more stress was put on demonstration rather thanpresentation. The Education Demonstration was changed toteaching devices and methods. The speech therapists pre-sented many ways in which parents could stimulatelanguage and learning at home. More free time was provided'Student Work Experience And Training

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for parents after the counseling group sessions, so that theycould "unwind" from the often highly emotional impact ofthese sessions. Due to the large number of Spanish-speakingfamilies, one of the counseling sessions was conducted inSpanish h 3 Spanish-speaking caseworker under the super-vision of a social worker. As it turned out, the social workerspoke no Spanish and families made a great effort to speakin English to accommodate her' (A full program is attachedas Appendix #18.)

Finally it was decided to have a pizza party as a"warming up" on the first evening. Later, as during the firstyear, a movie would be shown. The Director of Recreationof this agency was in charge of all day camp arrangementsfor all children. Teachers were in charge of groups whichwere intergrated as to handicapped and non-handicappedchildren. Babysitting was also arranged through the Direc-tor of Recreation, with nearly everyone participating.Video tapes were to be made of significant parts of theconference.

Invitations were sent to the various advisory councils,committees and boards of UCP, and to all those membersof the community who might be interested in thisconference. Many visited and some of their comments areattached (Appendices #19, 20, 21).

II. The ConferenceThe weather was most clement. A heavy and very destruc-tive hurricane had passed the region two days before theConference, but most fortunately there was sunshine moreor less all the time the Conference was in session. It canwell be said that the Second Conference was a great success.All those participating felt they had spent time learning,sharing, and enjoying themselves.

There were, however, marked differences over the FirstConference due to the larger numbers of children andadults. For example, babysitting became very complexbecause so many more floors had to be used in the collegedormitories. Families did not all get to know each otherand tended to congregate in dormitories. Staff did notdevelop the same intimacy that had been characteristic ofthe First Conference. On the other hand, many morefamilies were reached. The ones that had been at the FirstConference acted as guides and helpers for the new ones.Speakers felt much closer to staff than during the first year.For example, the physician who present& the MedicalDemonstration brought his whole family for an extra dayso that they could participate and enjoy themselves.

III. THE EVALUATION summarized by Miss Peggy Crull,Evaluator

The Evaluation of the second year of the Summer FamilyConference was planned differently from that of the firstyear.

Through various channels of information, several con-clusions were reached about the effects of the Conferenceon the families. While all of the staff who attended felt theConference was a great success, the Early EducationProject's role as a model and demonstration programcompelled UCP to try to show objectively the effect of theexperience on the families which attended. UCP collectedseveral kinds of data.

Every parent answered a set of questions concerningwhat he felt were his child's present abilities and what hefelt his child would be able to accomplish in the future. Theparent filled out two similar questionnaires, one before andone after the Conference. The child's teacher also filled outthe questionnaire, once for each child. Her estimation ofthe child's abilities were compared to the parents' estima-tion to see where discrepancies occurred. It was hoped thatas a result of the Summer Family Conference, the discrep-ancies would decrease.

Some trends did appear. Although it was not statisticallysignificant, the parents who answered differently after theConference had changed their perceptions of their chil-drens' self-help skills. Before the Conference they saw theirchildren as less capable of feeding and dressing themselvesthan did the teachers. After the Conference, their judge-ments were more like the teachers'. We think the changecame about because at the Confert.-.ce the parents saw theirchildren with their teachers in a situation where they wereexpected to be independent. It seems that both teachersand parents had a great deal of trouble judging whether ornot a child's motor skills (particularly in ambulation) wouldimprove in time. The Conference experience seemed toclarify the problem for a few of the parents, but, on thewhole, it was still difficult for them to predict futureimprovements. This difficulty is present in a somewhatmodified form even for their teachers and therapists.Finally, the parents were most unrealistic or inaccurate intheir judgement of their childrens' present and predictedintelligence. Their estimate of the child's intelligence wasusually higher than the teacher's. This unrealism did notshow any change as a result of the Conference.

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14

While it was found that the statistical results of the pre-and post-questionnaires were inconclusive, this is notbelieved to be an indication that the Conference had noimpact on the parents. It is believed, however, that themeasure was not precise enough to measure the changes inperception of the children that it was felt occurred. Ameasure that will pick up such changes is still being sought.In addition, it was not felt that such changes are the onlybenefits that the Summer Family Conference might pro.vide. Other evaluation procedures were attempts at illustrat-ing those additional benefits.

On the same questionnaire, we asked the parents tocomment on what they liked best about the SummerFamily Conference, and what they liked least about it.Most of the negative comments were in relation to theaccommodations and the schedule. Since we had manymore families this year and because of difficulties withinthe Monmouth College Office of Community Relations,some of the families were inconvenienced in housing anddining facilities.

Comments on the content of the Conference weremostly positive, rid criticisms were constructive andintelligent. The morning lectures were praised by almosteveryone. A few modifications were suggested. For ex-ample, several parents mentioned that some of the informa-tion presented was not relevant to their own child'shandicapping condition. To remedy this, they suggestedthat parents attend only the morning lectures which wererelevant to their child. Or, perhaps, having differentconferences for parents of different kinds of children wouldbe more feasible. Another desire expressed by the parentswas that they have more time with the specialists wholectured so that they could ask advice about their child'sparticular problems. Without time for questions and an-swers, they felt that information in the lectures was toogeneral. Finally, some parents expressed regret that theyhad not had access to the kind of information and supportprovided by the Conference at an earlier time in theirchild's life. They suggested that such conferences beavailable for all parents of newly diagnosed cerebral palsiedchildren.

All parents responded very positively to the discussiongroups in the afternoon. Over half of them mentioned thatthis was one of the high points of the Conference. No onesuggested any changes in the format or timing of thegroups.

In general most people expressed genuine delight overthe quality of interaction of families with other familiesand staff with families. They found that getting togetherwith other families in such an "ideal' setting and talkingabout common problems gave them new insights andhelped them to realize that others "cared". They describedthe staff as approachable, dedicated, and warm, and werepleased to meet them in an informal setting. However, afew people commented that they felt the staff responsi-bilities were unevenly divided, and therefore, some staff"worked too hard." A few others felt that staff integrationwith families was poor. This opinion was probably anexception, but it helped to alert us to the need for moreindividual attention.

Another type of Evaluation of the Summer FamilyConference came from the social workers at each center,who were asked in December to send follow-up reports onthe families who went to Monmouth. They were asked tofocus an six questions:

1) What has the Summer Family Conference done tomake families in your Center better acquainted witheach other?

2) What has it done for better understanding of cerebralpalsy?

3) What difference has the Conference made for anyone family you may choose to report on?

4) Do parents show evidence of better acquaintancewith the agency and use of services?

5) Does the staff find parents more cooperative?6) Do you have evidence of better parent participation?

All of the social workers answered that they had seen someof the long term effects mentioned in the questionnaire.They reported that all families became better acquainted asa result of the Conference, especially within centers.Everyone madeplans to continue the friendships after theConference. Some mothers have successfully carried outtheir plans by having lunch together periodically; othershave found it difficult to find the free time to meettogether socially, but have continued warm relationshipswithin center activities. They also seem to feel morecomfortable with the staff and some have shown renewedinterest in working with and for the Agency. In three of thecenters, the social workers felt that the information oncerebral palsy which was provided at the Conference helpedin the parent's understanding of their childrens' disabilities.In one center, the scc;al worker felt that the parents had

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already become familiar with cerebral palsy in othercontacts with the Agency. Every social worker reportedthat parents seemed somewhat more cooperative with thestaff after the Conference, especially in requesting conferences with the teachers and in attempting to continuediscussion groups similar to the ones at the Conference.They have become more aware of agency services and morewilling to seek them out, although all centers have tried tocreate such an awareness as a part of the ongoing programs.

Another way in which the effectiveness of the Conference was evaluated to ask people from the professionalcommunity outside the Agency to submit opinions of whatthey had seen at the Conference. Several of those whoreceived letters requesting opinions sent back their com-ments. All were impressed by the "vivacious" participationof the parents and the warmth of interaction between staffand families. One of the experts felt that this week ofintensive counseling was perhaps one of the best vehiclesfor involving the family unit in the education of thehandicapped. As with the parents, all were especiallypleased with the discussion groups and felt that they werethe highlight of the Conference.

The four kinds of data we collected were invaluablesources of ideas for planning, both of future conferencesand of parent participation in the day to day activities ofthe agency, We have found that such data can help us inimproving our services and others in planning similarservices.

IV. Statistics AUGUST 29 SEPTEMBER 2, 1971

TOTAL NUMBER OF FAMILIES ATTENDED 38

# of mothers 37# of fathers 23

60TOTAL NUMBER OF CHILDREN 105

# of handicapped clients 38# of siblings. 67

105

OTHER RELATIVES: grandmothers 4grandfather 1

5

TOTAL NUMBER OF FAMILY MEMBERS , .170NUMBER OF SPANISH SPEAKING

FAMILIES 9 (14 adults)

BREAKDOWN OF FAMILIES BY BOROUGHManhattan 7

Bronx 16Brooklyn 6Staten Island 9

Manhattan (27)# of Families 7

# of Handicapped Clients 7

# of Mothers 7

# of Fatheis 2# of Siblings 8# of Grandparents 3

Brooklyn 1291

# of Families 6# of Handicapped Clients 6# of Mothers 6# of Fathers 4# of Siblings 13

TOTAL # OF CLIENTSTOTAL # OF MOTHERSTOTAL # OF FATHERSTOTAL # OF SIBLINGSTOTAL #OF GRANDPARENTS

3837

2367

5

170

V. Recommendations

It was recommended at a post conference meeting ofparticipating staff members that week end conferencessimilar to the Summer Family Conference should beoffered to all families of pre-school children entering aprogi am of this agency.

It was recommended that the number of participatingfamilies should be limited to not more than 25 families atany one time. Staff members found that the actual numberof persons at the second year's conference was too large forthe close personal contact established at the first year'sconference.

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Appendix No. 1

EXCERPT FROM TAPED INTERVIEW

Interviewer:How old is your child?

Father:Three. She was three in March.

Interviewer:How hLndicapped is she?

Father:On the right side. We really don't know too muchbecause the doctors don't tell you anything.

Interviewer:What do you mean?

Father:Well, when we go from doctor to doctor, they tell youthey don't know how bad she is. I really don't get anysatisfaction, at least from the doctors.

Interviewer:Have you gone to a Cerebral Palsy Clinic?

Father:Yes. They had one session where we live. They had threedoctors come in the hospital but as far at that goes,there is no clinic for cerebral palsy children.

Interviewer:Were they more helpful than doctors have been in thepast as far as imparting information to you?

Father:Well, I don't know. It seemed like one didn't agree withthe other about her condition. It was sort of confusing.And you don't know who to listen to. . . .whose word totakL.

Interviewer:What kind of medical treatment haa your child gotten inthe past? Was it a matter of going from doctor todoctor?

Father:Well, we were going. ... When we first found out shehad cerebral palsy was when she wouldn't crawl. Theright side her leg was stiff and we took her to thepediatrician and he didn't know anything about itexcept that he sent us to another doctor and then theysent us to an orthopedic surgeon. Then the doctors toldus she had cerebral palsy and that was the end of it. Wedidn't know where to go from there or who to go to sowe went home and about three or four weeks later, awoman came by from the Elks Club. She told my wifewhat to do for the child and then about six months laterthey opened the UCP preschool in our borough.

Appendix No. 2

United Cerebral Palsy Summer Parent ConferenceSunday, August 29-- Thursday, September 2,1971SUNDAYAUGUST 301:00 P.M.

2:00

4:00

4:15.5:15

5:30

7:30

9:00

MONDAYAUGUST 31

8:00 A.M.8:309:30

Staff ArrivalBuses leave Bronx, Brooklyn, Manhattan& Staten Island

Arrive at Monmouth CollegeAssignment of rooms by staff & studentsfrom collegeTour of campus (individually for eachfamily with students and staff members)

Dinner Welcome by Mr. Leslie D. ParkDining Hall

General meeting of parents and childrenGo over weekly scheduleIntroduce children's group leaders Mr.

ParkIntroduce major staffQuestion periodExhibits at Woodrow Wilson HallSelf-halp devices assembled by Mrs. LoisRatalskyLiterature assembled by Mr. EdwardKilbaneFilms of childrin in programChildren in their own programCoffee hour for all adults with Board ofDirectors at Woodrow Wilson Hall

Recreation facilities availableFilmPoolStaff Meeting & Breakfast Dining Hall

Family Breakfast Dining HallAdult Meeting:

- Adult Meeting: Demonstration of MedicalEvaluation) at Woodrow Wilson HallChildren's Program (see separate 5:30schedule)

12:00 Noon Luncheon (Children under supervisionof camp staff) Dining Hall

1:30 P.M.. Small Group Meetings: "What is YourProblem, Who to See?" (See page 6)Childrens Program (see separate schedule)

3:30 Recreation Period: Family style -- pool,hikes, beach, etc. Life guards on duty:2:00 4:00 Parents responsible for theirchildren Staff Off Duty

5:30 Dinner Families will eat togetherDining Hall

7: 30-11: 00 Recreation:PoolFilm Title to be announcedCoffee hour each evening, exact time tobe announced daily

Mental Health Staff Available for Construc;;on and Discus-sion

TUESDAYSEPTEMBER 18:00 A.M.8:309:30

Staff Meeting & Breakfast

Family Breakfast

Adult Meeting: Learning Problems ofChildren With Cerebral PalsyMrs. Marilyn Orgel, Director BrooklynCenter

11:00 Woodrow Wilson HallChildren's Program (see separate schedule)

12:00 Noon Luncheon

1:30 P.M. Small Group Meetings (see page 6)

Children's Program (see separate sched-ule)

3:30 Recreation Period

Dinner: Cook-out with games, food pro-vided by Monmouth College

ucp 17

18

8'00-9:00

9.00.11:00

Meeting with brothers and sisters led byMr Robert Schonhorn,Mrs. Dorothy Nelson, Mr Mark Weilerand group leaders.No sitters for older children until 9 pmRecreation:PoolFilm Title to be announcedCoffee hour

aff Available for Consultation and Discus-Mental Health Stsion

WEDNESDAYSEPTEMBER 28 00 A M.8:309.30

to

11.00

12:00 Noon

1:30 P.M.

Staff Meeting & Breakfast

Family Breakfast

Adult Meeting: Demonstration of HomeManagement

Mrs. Lois Rafalsky and Mr. RobertBartlett demonstration of devices, tech-niques for lifting and carrying WoodrowWilson Hall

sched-ule)Children's Program (see separate sched-

Luncheon

Small Group Meetings (see page 6)

uClhei)ldren's program (see separate sched-

3:30

5:30

7:00.8:00

8'30

Mental Healthsion

THURSDAYSEPTEMBER8:00 A.M.9.30

11:00

12:00 Noon1:00 P.M.

2:00

Recreation Period

Dinner

Parents Only (optional) Brothers andSisters How Do They Feel? Mr RobertSchonhorn Woodrow Wilson Hall

Recreation: Talent Show for Parents &Children with Mr. Baron Keith Stewart,writer, lyricist & singer Coffee Hour

Staff Available for Consultation and Discus-

SMALL GROUP MEETINGS

BROOKLYN Meeting with Mental Health TeamDaily at 1:30 pm

A PsychologistA Social WorkerA Teacher

MANHATTAN & BRONX Meeting withTeamDaily at 1:30 pm

A PyschologistA Social WorkerA Teacher

3Breakfast for everyone

Adult Meeting. Understanding LifelongPlanning For and With the CerebralPalsied, led by Mr. Leslie D. Park

Slides of Adult Program

Children's Program (see separate sched-ule)

Packing

Luncheon

Conference Evaluation: Questions to beanswered by individual families to indi-vidual staff members

Buses leave for return trip.

Mental Health

STATEN ISLAND Meeting with Mental Health TeamDaily at 1:30 pm

A PsychologistA Social WorkerA Teacher

ucp

I

k

r

Appendix No. 3CHILDREN'S SCHEDULE

SUNDAY Same as Parents

MONDAY 8:30 Breakfast with family9:30 Meeting Unit leaders

Pre-schoolers Match colored nametags to balloons on trees. (In case ofrain meet in the dormitory lobbies).School Children At the picnictables.(In case of rain meet at the StudentUnion)Music, Dramatics, Crafts, Games

11:30 Pre-schoolers Clean up at the DiningHall for LUNCHSchool Children return to dorms toclean up for LUNCH and put on swimsuits

12:00 All Children LUNCH with leaders inthe Dining Hall

12:45 Pre-Schooiers In the Student UnionNap time, movies, storiesSchool Children In Edison HallRoom E.1Movies, Song Fest

1:45 Pre-Schoolers In Front of StudentUnion(In case of Rain meet in Dorm lobbiesand Student Union).Wading, and out-door activitiesSchool Children In the Pool Area(In case of rain use the Gym).

Boys: 2:00 3:00 Swimming3:00 4:00 Sp. is or HikingGirls: 2:00 3:00 Sports or Hiking3:00 4:00 Swimming

4:00 Parents pick up their children5:30 DINNER with family7:30 Babies Sleep (Baby sitter on duty on

all floors)3.7 Year olds Dormitory lobbiesBedtime Stories8.12 year olds Wilson Hall TalkSession13-19 year olds Wilson Hall TalkSession

9:00 3.7 year olds Sleep (Baby sitters onduty on all floors)8 and UP (At the discretion of par-ents)Edison Hall Movies

11:00 BEDTIMETUESDAY Same as Monday, except Dinner will

be a COOK-OUT at 6:30 P.M.

WEDNESDAY Same as Monday, except evening pro-gramNo Talk Session tonight

7:00 Rehearse for show8:00 TALENT SHOW

THURSDAY Same as Monday until noon

12:00 LUNCH with families1:30 Depart for home.

ucpNATIONAL OFFICERS 8

LEONARD H GOLUENSONCtoitman ' tre Hoard

JACK HAUSMAN .,1PALMER TUREEHEMAVice Ch,x,rirerer the Beard

GEORGE SCHWEIZER JR LSO

WARREN F BEER 1Exec I ,Lt' PrE,Kie, t

OFFICERS

JACK HAUSMAN gHor7"a'r C',1

or trreBoard 1ROBINT I ROGIN

Chad., ry, ' pld,cfLEO HAUSMAN _4,Pre:, yen:

CHARLES E MCCARTHY ,..-Execu'he Vce Pres,clent

GEORGE F DEMBOW CCVice 're..derli 0

ALBERT.) ELIAS >.vice Pfes

MRS JOSEPH RoTHENef .GVice Presider: uj

SAMUEL DRANtCKre ',wet

MRS MARTIN EATON FSe.'c'd'y

DIRECTORS -cJEROME BELSON

HARVEY 0 CARTER V.SIDNEY CARTER, M D Lr

MRS THOMAS L J CORCORAN coHARRY J DELANEYERNEST FLIESGHER

NORMAN rox WMRS JACK GODDARD enMRS JACK HAUSMAN Ffi

MARTIN HAUSMAMs CHARLES D HERRIRT

, WILLIAM C LANGLEY LiMISS IDA LEVINE -4

ALAN LiGHTENBERGSAMUEL R MILLER

MRS ALAN MOSS Rt:Jr; LOUIS J ROBBINS

MEM C ROONEY JR IMARTIN RUBENSTEIN 0

MRS PAUL N SAULTLEON R SPEAR y

AIRS HAROLD STORCN CCMILTON UNGER en,

°ERICK D W,..NSONMRS. ELLIS WINER

EV S MORTON I DAVIOSONPre,,,Mmt,

Women c Dvos,on

PROFESSIONAL e.,U-

ADVSORY COUNCIL

DI' EY CARTER, M DCr,d 'man Cl)

DONA CONWELL. M D JLEOE.Ro DILLER. PH D

S. JRE G )IMIGHAEL, PH D 0-I t :AMR' iOLDSTEME, PH D ,

DA ID HARRIS M DSTANL1 S LAMM M D

RIG IARD M LUBELL CCARTiR I TIC'AVITT, ED D CO

MIS. i IA MCGUIRE ujMISS 7 ION MARTIN CC

MISS FL' t GE MOSHER LuMIS. I NET PINNER

LAWRENCE B

Exert)RORK

Odectot

20 and Put, K.

3001, M D

it D PARK)TIP, for

I KIMBALLPar

1:1113F-Z

Appendix No. 4

April 21, 1,70

Summer will ;con be upon us and United Cerebral Palsy ofNew York Inc., cordially invite you and your childrento spend fiqs of those het day's as our guests at MonmouthCollege in Red Bunk, New Jersey, from August 30, throughSenteMber 3, 1970.

During these five days special programs of a recreational andeducational nature will be presented in the hope of making yourstay with us as enjoyable and profitable as possible. Duringyour stay, you will not onl, have an enjoyable vacation, butwill be able to spend some ',ine in meetings with our staff.We hope we can discuss the problems of raising .1 handicappedchild and how to plan for als future.

Each family attending till be provided with a spacious fanilyunit, consisting of becrcoms, a living room, toilets and showers,a snack kitchen vith a refrigerator, and a laundry room. Allmeals will be provided :In a central dining hall.

Your children, both handicapped and non-handicapped, will beable to spend several hours each day with our leaders and coun-selorq in day camp activities suitable for their age and interests.

This summer program is providea free of charge. Transportation,if necessary, will also be provided. Fathers who cannot get awayfrcr work during this time can stay at the College for the even-ing programs and go to their jobs during the day.

In the hope that you can spend this time with us, we are en-closinr a form for you to complete, together with a returnstamped, addressed envelope. Please return this form by !64y 4.lam. If you have any ouestions, please do not hesitate to callre at 661-0900.

We look forward to seeing you at the goo] or in the dining hallat Monmouth College.

,Sincerely yours,

Rerta RafaelProgram DirectorBR/dm

VCR

r

Appendix No. 4a

UNITED CEREBRAL PAi_SY OF NEW YORK CITY, INC. Relationship460 West 42nd Street, New York, N.Y. 10036

FAMILY VACATION ENROLLMENT FORM Age

The following members of my family will go to MonmouthCollege at Red Bank, N.J. Family Summer Camp from Signature of applicant

August 30 to September 3 1970 and will bring:Address:

NAME of mother cr guardianPhone:

NAME of handicapped child

NAME of other family members Center in which child is enrolled:

Father Staten Island

Sister: Name Age Manhattan (in Carver Hall)

Brothers: Name Age Brooklyn

Other: Name Bronx

Appendix No. 5

UNITED CEREBRAL PALSY OF NEW YORK CITY, INC.460 West 42nd Street, New York, N.Y. 10036

June 1, 1970

Dear

At the end of April you received a letter with aninvitation for a 5 day summer holiday for you andyour family at Monmouth College, New Jersey.

We are still waiting for your reply and would liketc hear from you soon.

We are enclosing a new application form and a self-addressed envelope.

Please reply as soon as possible. If y:-u have anyproblem contact me at 868-0250.

Yours truly,

Berta RafaelProgram Director

BR:mhenclosure

22 ucp

Appendix No. 6

UNITED CEREBRAL PALSY OF NEW YORK CITY, INC.460 West 42nd Street, New York N.Y. 10036

June 11, 1970

Mr. and Mrs.

Dear Mr. and Mrs.

We are very pleased that you and your family can joinus for the family vacation on August 30th throughSeptember 3rd.

We shall let you have details closer to that date andshall set up a meeting with you in July for that purpose.

Sincerely yours,

Berta RafaelProgram Director

BR:mh

ucp 23

Appendix No. 7

UNITED CEREBRAL PALSY OF NEW YORK CITY, INC.460 West 42nd Street, New York, N.Y. 10036

July 21, 1970

Mr. and Mrs.

Dear Mr. and Mrs.

A meeting concerning your stay at Monmouth College willbe held on Tuesday. July 28, 11:00 am at the UNITED CEREBRALPALSY CENTER, 297 Bard Avenue, Staten Island. Questionsyou have about the Monmouth College Summer Holiday will beanswered at this time. Please make sure to be there. If

transportation is needed contact Mrs. Hanshaft at 981-0483.

Sincerely,

Berta RafaelProgram Director

BR:mh

24 ucp

Appendix No. 8

UNITED CEREBRAL PALSY OF NEW YORK CITY, INC.339 East 44th Street, New York, N.Y. 10017

August 14, 1970

Dear

Just in case you were not at the parent meeting and to remind you,we are giving you more detailed information about the UNITED CEREBRAL PALSYvacation camp at Monmouth College. We are writing to you in order to sharewith you what we discussed at the meeting.

1.) Please bring wheelchair, baby carriage, stroller, playpen, bed railsor any other special equipment used regularly by one of your children.

2.) Dress will be casual. Children should bring playclothes. Bringsomething for rainy weather and for cool days also. Washer and dryerare available in each dormitory building.

3.1 If you need any special clothing like swimsuits and are reluctant tobuy these for the four days, contact us and we shall try to help. Bringswimsuits and towels for the beach.

4.) Three meals will be served daily: breakfast, lunch and dinner.Coffee or milk and cookies will be served later in the evening foradults and older children.

5.) You will live in a small unit with bedrooms, toilets and lounge.

6.) You will be picked up, where your child is usually picked up, between1:30 and 2:00 pm on Sunday, August 30th 1,o please be ready at 1:30 withyour luggage for the trop to Monmouth college. You will return to yourhome Thursday, September 3rd around 3 - 4 pm.

7. If your children like to sleep with or are attached to a special toyor blanket, bring it along so tnat they are comfortable in the new bed.

8.) If any member of your family plays a musical instrument pleasebring it along.

9., Your children will be in day camp, on the grounds, run by staff membersof UNITED CEREBRAL PALSY from 9:30 - 3:30 daily. Then you have them until7:30 pm. There will be sitters in the evening and activities for older children.

A program telling about the educational and re reational events will begiven to you on arrival at Monmouth.

If you have any questions, etc. call 661-0900 X 812 and we will be gladto answer them.

ucp 25

Appendix No. 9UNITED CEREBRAL "T.SY OF NEW YORK CITY, INC.33o East 44th Sureet New York, N.Y. 10017

MEMORANDUM

August 3, 1970

TO: Board of Directors

irofessional Advisory CouncilEarly Education Advisory CommitteeOthers

FROM: Leslie D. Park, Executive Director

RE: SUMMER FAMILY CONFERENCE, MONMOUTH COLLEGE, WEST LONG BRACH, N.J.RECE1TION AND SOCIAL HOUR, SUNDAY, AUGUST 30, 1970, WOODROW WILSONHALL, 7:30 1.N.

One of our most exciting enterprises related to family counseling and parenteducation will be held at Monmouth College, ?lest Long Branch, N.J., (a com-fortable hour's drive from New York City) this summer from Sunday, August 30through September 3, 1970.

More than 30 families, representing over 130 mothers, fathers, sisters andbrothers of handicapped children, will be attending this conference as a partof the Early Education Project being carried on by our agency. In addition,more than 45 members of our staff will he in attendance for the four lays andwill be working with the parents and children in an educational program whichwe hope will provide a useful and new experience for all concerned. The ob-jective is to see if we can provide parents with a concentrated period ofeducation concerning what they are facing with a young handicapped child inthe family and to help them plan for the future. Much time and thought hasgone into the program and it promises to be an exciting experience for allof us.

Yo e. , f/: 01. : -0 I OS OD:, - .August 30th at 7:30 P.M.. in Woodrow Wilson HallEonmoutISollege. for areception for the parents and staff members who will be participating in thisconference. Coffee, punch and light refreshments will be served and we willall have an opportunity to see the makeup of the conference participants.

Many of the parents who will be attending will have had very limited experiencesof this sort. Your presence is both to help them feel more comfortable, as wellas to get a personal view of this program.

I sincerely hope you will be able to join us for this evening. A return cardis enclosed for your convenience. Also enclosed, is a map which you may useto help you find Monmouth College.

LDP:bmEncl.

26 ucp

Appendix No. 10

UNITED CEREBRAL PALSY OF NEW YORK CITY, INC.339 East 44th Street, New York, N.Y. 10017

UNITED CEREBRAL PALSY SUMMER PARENT CON-FERENCE

GUIDE TO INTERVIEWERS

1. See each parent separately. Solicit names and ages ofother children and fill in blanks.

2. Please put as much information as possible into mother'sor father's own words.

3. Comments from you go into box.4. Where there is a line: NO YES,

let parent make own mark.

NAME OF CHILD IN PROGRAM:

AGE OF CHILD IN PROGRAM.

NAME OF PARENT OR GUARDIAN

How many years of schooling?

What job do you have (motheror housewife considered asa job)?

NAMES OF OTHER CHILDREN HERE WITH YOU: AGE

OTHER CHILDREN AT HOME: (Names & Ages)

5. Wherever possible try to solicit examples for replies(items marked as a, b, c).

6. Where reply is unclear probe by saying: "Tell me moreabout it", "Can you explain further"?, "Try and give mean example."

7. Try not to pose "leading question(s).8. Accept parents refusal to answer question(s).9. Please rate the following at the end of interview:

Was parent cooperative?NO YESDid parents understand questions?NO YES

COMMENTS BY INTERVIEWER

ucp 27

28

DID YOU LIKE THIS VACATION?Check:1. YES WITHOUT ANY DOUBT OR RESERVA-

TION2. YES BUT I AM NOT SURE ABOUT SOME

THINGS.3. NO THERE WAS A LOT I DID NOT LIKE.4. NO NOT AT ALL.IF ANSWER CHECKED IS 1, 2, or 3:1. WHAT DID YOU LIKE THE MOST?:

a

b.c.

2. WHAT DID YOU LIKE THE LEAST?:a

bc

DID YOU LIKE THE SLEEPING ARRANGEMENTS?NO YES

1. WHAT DID YOU LIKE?a

bc

2. WHAT DID YOU NOT LIKE?a

bc

(Try to get three answers for items 1 and 2)

DID YOU LIKE THE FOOD?:NO YES

1. WHAT DID YOU LIKE THE MOST?a

bc

2. WHAT DID YOU LIKE THE LEAST?:a

bc

DID YOU LIKE THE ENTERTAINMENT?:NO YES

1. WHAT DID YOU LIKE THE MOST?:a

bc

COMMENTS BY INTERVIEWER

ucp

2 WHAT DID YOU LIKE THE LEAST?:a

b

c

DID YOU LIKE THE FREE TIME ARRANGEMENTS?NO YES

DID YOU HAVE ENOUGH TIME TO DO WHAT YOULIKED?

NO YESDID YOU HAVE TOO MUCH UNORGANIZED TIME?

NO YESDID YOU LIKE THE DEMONSTRATIONS IN THEMORNING?1. MEDICAL EVALUATION

NO YES2. EDUCATION

NO YES3. HOME MANAGEMENT

NO YES4. LIFELONG PLANNING

NO YESCOULD YOU TELL ME THE ORDER IN WHICH YOULIKED THEM AND WHY?:

WHY DID YOU LIKE THEM?

WHY DID YOU NOT LIKE THEM? (As appropriate fromprevious answer)

WERE YOU SATISFIED WITH THE CHILDREN'SACTIVITIES?

NO YES1. WHAT DID YOU LIKE THE MOST?2. WHAT DID YOU LIKE THE LEAST?DID ENJOY THE SUMMER FAMILY

(handicapped child)VACATION?

NO YESDID ENJOY THE

(names of other children)VACATION?

NO YES

COMMENTS BY INTERVIEWER

UC p 29

DID YOU TALK TO?:Name of PsychologistName of Social Worker

DID YOU LIKE THE MEETINGS IN THE AFTERNOON?NO YES

1. WHAT DID YOU LIKE THE MOST?a

bc

2. WHAT DID YOU LIKE THE LEAST?a

b

c

DID THE VACATION HELP YOU IN ANY WAY?NO YES

DESCRIBE HOW: (Try to elicit reasons)

DID BEHAVE AS HE/SHE DOES AT(handicapped child)

HOME?NO YES

DID BEHAVE AS HE/SHE DOES(names of other children)

AT HOME?NO YES

HOW WAS THE SAME?(handicapped child)

HOW WAS DIFFERENT?(handicapped child)

HOW WERE THE SAME?(names of other children)

HOW WERE DIFFERENT?(names of other children)

IF DIFFERENT, WHY DO YOU THINK THIS HAP-PENED?

COMMENTS BY INTERVIEWER

30 VCS

DID KNOWING OTHER FAMILIES WITH SIMILARPROBLEMS CHANGE HOW YOU FEEL ABOUT YOURCHILD?

NO YESWHY DID YOU PLACE YOUR MARK WHERE YOUDID?

NAME TWO FAMILIES WHO YOU THINK ARE DOINGA GOOD JOB.1

2WHY OR HOW?:

IF WE REPEATED THE SUMMER FAMILY VACATIONNEXT YEAR(a) WHAT WOULD CHANGE? (b) WHAT WOULD YOUKEEP?1. ACCOMMODATIONS2. FOOD2. PROGRAM4. CHILDREN'S PROGRAMCOMMENT:

COMMENTS BY INTERVIEWER

SIGNATURE OF INTERVIEWER

Appendix No. 11CUE "-TIONNAIRE

I. I-1,E:A. What kind of things are you interested in learning about

your child?1. Medical condition2. Causes of medical condition3. Treatment of medical condition4. Prognosis (explain term as needed)5. Others:

B. Ways of living with the problem:1. Self-help: feeding

walkingtoiletingdressing

Throu6 i special devicesThrougn special training

2. Schooling and future placement

ucp 31

3. Ways of running a household with a handicappedchild in it.

4. Ways of dealing with behavior problems.5. Ways of dealing with brothers and sisters, relatives,

neighbors.

WHICH ARE THE THREE MOST IMPORTANT OF THEABOVE?

QUESTIONNAIREII. POST:A. Which of the topics listed below would you like

discuss further during the school year?1. Medical condition2. Causes of medical condition3. Treatment of medical condition4. Prognosis (explain term as needed)5. Others:

to

B. Ways of living with the problem:1. Self-help: feeding

walkingtoiletingdressing

Through special devicesThrough special training

2. Schooling and future placement3. Ways of running a household with a handicapped

child in it.4. Ways of dealing with behavior problems.5. Ways of dealing with brothers, and sisters, relatives,

neighbors..

WHICH ARE THE THREE MOST IMPORTANT OF THEABOVE?

Appendix No. 12

Interviewer: When you got the invitation Mrs. H and youdid not know what this place looked like ...

Mother: I sure didn't. But when I did arrive hereSunday and I saw all the accommodationsand all, I said this is really something. This isreally beautiful. It's like living in a hotel ormotel. And the cribs. The baby liked it in hiscrib. Sleeps good-1 hope. Poor kid is notused to it yet and that's what it is. And mykids. No sooner than they hit the bed fromplaying all day long, they're knocked out.They said Joan, my daughter Joan, she isthe one who had brought up the subject. Shesaid, "Mama I would love to come to thiscollege. This is a beautiful college." I said,you learn hard enough and study and all, youcan come to this college. I said, well that'sup to you. All I want from you is just tofinish high school. Do, that then you can dowhat you want to do after that. But mydaughter, Joan, if she keeps it up like she isnow and she wants to go to college, maybeshe'll make it.

Interviewer: Great!

Mother: I hope she does make it. And A. said. Well,he's young yet, he really don't know toomuch about it, he said "I like it Mommy. It'sbeautiful Mommy." I said, "It is baby." But,the first night he wanted to go back home. Isaid, "Why?" And he said, "Too many treesout here."

That's funny. 1 all me, Mrs. H., what wouldyou do different other than what we havedone? How would you improve what we'vedone?

Mother: To tell you the truth, I could not improve itno more than you have done. To meeverything was arranged nicely and is beauti-ful and is set up nice for the kids and for theadults.

Interviewer: I noticed you are very friendly and talk witha lot of the other women.

Mother: I do. They like it here. They really like ithere. They saidhow do you sayyou callthis a vacation. This is really a vacation.

Interviewer:

Interviewer:

Mother:

Interviewer:

Mother:

Interviewer:

Mother:

Interviewer:

Mother:

Interviewer:

Mother:

Interviewer:,

Mother:

They say it's beautiful for one thing and thekids enjoy themselves. All of the mothersfeel like I feel too. We got the kids out ofour hair for a while. That's the mostimportant thing.

How about the things that you learned?

Well, I learned quite a few things, like I said,about how to handle a child.

What made you accept the invitation in thebeginning?

Well, I'll tell you. It's because I said it mustbe interesting for my son. It must be a lot tolearn about him and what I could do for himor more than what I'm doing for him now.And I figure this way, well, you never learntoo much. There is always something new tolearn about a child who has cerebral palsy.And then I found out there is a lot to learnfrom the meetings and all. There is a lot tolearn about what you can do for your child,how to make him comfortable, how to makehim happy, about his dislikes, likes and soon.

How do your other children like it here?

My kids love it here. My kids don't want togo home.

Your oldest daughter is 14 and i;he is the onewith the heart condition?

Right, right. So really, I have more than onechild sick, I have two kids sick.

That's true. It's hard.I've got my share. I have my share ofproblems, I got my share of sickness and Igot my share of doctors and all.

Well, one of the things that we tried to dowas to make things easier for you so thatyou could take it easy.

You all have. It has helped me out a lot,because from 9:30 to 3:30 I could seemyself doing a whole lot that I can't do athome. You're relaxing, resting a little bit,listening to the lectures and all and if I havesomething very important to do, I tell themI can't make it and I do what I have to do

and get my kids straightened out and don'thave to worry about them at night time.This way I can relax more. I feel 100%better and I feel more rested. Since I had mybaby, he is six weeks old, I feel 100% better.I'll tell you the honest truth, when I gohome now I can say / have been somewhereand I have rested for four days.

Interviewer: That's wonderful.You sound as though you are quite busyright now and I am not going to keep youvery long. How have these meetings beendifferent from what you had in school andhave you found them more interesting:

Mother: They are more interesting. They are longerbut they are more interesting because I havelearned a lot more and I have met differentpeople with my same problems that feel thesame way that I do. Because a lot of times athome and when I have these meetings once amonth, there are so many people involved Inever have the chance to talk to someone.

Interviewer: Personally?

Mother: Personally. Right. But this way everyone isreally, you know, helping out. Doctors arecoming, you know, speaking on differentthings and a lot of questions are beinganswered that I don't even have to ask Sothat part of it is very educational and itmakes me feel that we are talking about theparents and things, that I am not by myselfwith this type of thing. I am not the onlyone that sometimes feels that everything isagainst me. And this I really feel betterabout.

Interviewer: Will you see any of these people again in thecity? Will you talk them? Will you be intouch with them?

Mother: Yes. There are quite ew I c is not knowbefore coming here it n live in i n oklyn andother places. There on lady that lives inmy unit that I have be )ms very and of andI'm pretty sure we will keep in touch witheach other.

Interviewer: I see. And you think that vvili be helpful.

ucp 33

34

1W

Mother: Yes. II oo more than just to get on thephone e.id talk about 10 minutes. And,always th s helps me any way.

Interviewer: I think it helps almost any body to have ashoulder to .ean on, which I know you don't

MEMORANDUM

Mother:

have. Tell me, if we had another one of thesewould you come?

Now that I'm prepared I believe that I wouldbecause I know that it isn't one thing.

Appendix No. 13

August 14, 1970

=R DM: Mrs. Berta RafaelDirector, Early Education Project

TO: ALL STAFF ATTENDING SUMMER PARENT CON-FERENCE,MONMOUTH COLLEGE, WEST LONG BRANCH,N.J.SUNDAY, AUGUST 30, to THURSDAY, SEPTEM-BER 3, 1970

GENERAL INSTRUCTIONS1. Reminder: Staff meeting for all attending the Summer

Parent Conference, on Wednesday, August 26th, 10 to12 Noon, Board Room, 2d floor, 339 E. 44th St.

2. Staff members should be at the College by 1 P.M., onSunday, August 30th, before the families arrive, to settleinto their quarters and familiarize themselves with thecampus as much as possible.

3. A map showing routes and driving instructions to theCollege is attached. It is suggested that you allow from 11/2 to 2 hrs. treating time.

4. For those commuting daily to the College, an agencybus will pick up passengers at 339 E. 44th St., daily,except Sunday, August 30th. The exact time will beannounced at a later date. Staff members will also returnin the evening by bus.

5. Staff members requesting transportation for Sunday,August 30th, will be informed of pickup time.

6. Dress will be casual and should include rainwear.

7. Staff will be served breakfast at 8 A.M., and parents andchildren will breakfast at 8:30 A.M.

8. Work assignments will be arranged by Division heads,who will advise you of your responsibilities.

If you have any questions, please contact me or BelleMiller.

DIRECTIONS TO MONMOUTH COLLEGEFOR THOSE

WHO ARE DRIVING DOWN BY THEMSELVES

Driving out of New York City take the Lincoln or HollandTunnels to connect with the New Jersey Turnpike South.(The Holland Tunnel and Turnpike has less traffic than theLincoln Tunnel and Turnpike.) From Staten Island theGoethals Bridge connects with the New Jersey Turnpike.

Get off the New Jersey Turnpike at Exit 10 to connectwith the Garden State Parkway, South.#105 Parkway Exit isthe best shore route to Long Branch because the road fromthe Parkway runs right into the Eatontown traffic circlepictured on the enclosed map to Monmouth College,

Tolls will be about $2.00 each trip.

ucp____

Appendix No. 14

TO PARENTS OF PRESCHOOL CHILDREN IN UCPPROGRAMS

UNITED CEREBRAL PALSY OF NEW YORK CITY, INC.IS PLEASED TO ANNOUNCE ITSSUMMER FAMILY CONFERENCE

SUNDAY TO THURSDAYAUGUST 29 TO SEPTEMBER 2, 1971

ATMONMOUTH COLLEGE

WEST LONG BRANCH, NEW JERSEY

You and your family are cordially invited to be the guests ofUnited Cerebral Palsy at a beautiful college campus locatedon the New Jersey shore. Meetings and group sessions areplanned at which it is hoped we can help each other withthe day-to-day problems we face in bringing up a handi-capped child. Comfortable sleeping arrangements anddeliciously prepared meals have been arranged. Day campactivities will be provided for all children, handicapped andnon-handicapped. There will be opportunities for adultsocial and recreational activities.

If you are interested and would like to know more aboutthe summer family conference from August 29th toSeptember 2nd, please telephone me at the center or returnthe attached slip below as quickly as possible.

Sincerely Yours,

SOCIAL WORKER

PLEASE FILL OUT AND RETURN

! am interested in knowing more about the SummerFamily Conference at Monmouth College, August29th to September 2, 1971.

Signature

ucp 35

Appendix No. 15PARENT'S QUESTIONNAIRE

SECTION 11. Please write your street address and borough in the

blank below.You do not need to write your name.Street Address Borough

2. Sex of your handicapped child in our program.Boy Girl (Check one)

3. Birthdate (or age) of the handicapped child4. List age and sex of other children in your family.

Age Sex Age Sex1) 4)2) 5)3) 6)

5. Are you thefather_ mother grandfather_ grandmother _other (Check one)

6. If you are working at present, what is your job? (Motheror housewife is considered a job.)

7. What language is spoken in your home?

SECTION 2Please answer the following questions to the best of yourability.DO YOU THINK YOUR CHILD:1, Has normal intelligence (that is, average or above)?

(Check one)Yes_Maybe yes _ I'm not sure_No _

2. Will he or she be able to attend regular school some day?(Check one)Yes_Maybe yes I'm not sure_No_

3. Will he/she be able to learn to read a newspaper? (Checkone)Yes_Maybe yes I'm not sure _No_

4. Will he/she be able to graduate from high school ifhe/she works hard? (Check one)Yes_Maybe yes _I'm not sure_ No

5. Will he/she be able to attend a college some day ifinterested and money is available? (Check one)Yes_Maybe yes_ I'm not sure_No _

6. Will he/she be able to attend a t:ade or vocational schoolsome day, if interested? (Check one)Yes_Maybe yes I'm not stir ._No _

7. Will he/she need to attend a special class for slowlearners when he/she become' of school age? (Checkone)Yes _Maybe yes _ I'm not sure_ No _

36

8. (a) Has he lower than normal intelligence? (Check one)Yes_Maybe yes_ I'm not sure_No _(b) Is he functioning like a: (Check one)

one year oldtwo year oldthree year oldfour year oldfive year oldsix year oldseven year oldeight year old

(c) If he is slow, do you think he will make up in timefor that slowness? (Check one)

Yes _Maybe Yes_ I'm not sure_No _(d) If so, how much will he make up? (Check one)

All _About half _ A little _ None _(e) Do you think your child may require care inan institution some day? (Check one)

Yes_Maybe Yes _ I'm not sure_No _(f) If so, why? (Check any that apply)

_ To help him learn_ To make him happier_ To help you with his care

9. Will he be able to learn to play the piaro or a musicalinstrument some day if he has the interest? (Check one)

Yes_ Maybe yes _ I'm not sure_ No _10. Will he be able to keep up with the other children of hisage in:

(Check any that apply)

_ Regular play?_ In gymnasium?_ In competitive sports?

11. Will he be able to join and participate in a regular orspecial Boy or Girl Scout group if he is interested? (Checkone)

Yes ._ Maybe Yes_ I'm not sure_No _12. As an adult, will he be able to travel alone to distantcities? (check one)

yes _ Maybe Yes _ I'm not sure _No _i2 Nill he be able to choose suitable friends? (Check one)

Yes_Maybe yes _I'm not sure_ No _14. Will he be able to go on social dates when he is in theolder teens? (Check one)

Yes_ Maybe yes _ I'm not sure _No _

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15. Will he be able to manage a family of his own, as anadult? (Check one)

Yes _ Maybe yes_ I'm not sure No _16. Will he, as an adult, be able to manage his ownhousehold? (Check one)

Yes _ Maybe yes _ I'm not sure_No17. In adulthood, will he be able to do his own mealr 01 -ling and shopping for food? (Check one)

/es _ Maybe yes_ I'm not sure_ No _18. As an adult, will he be able to manage his own budget?(Check one)

Yes _ Maybe yes _ I'm not sure_ No _19. (a) As an adult, will he be able to have a regularpaying job and be self-supporting? (Check one)

Yes Maybe yes I'm not sure_No(b) If yes, how much will he be able to supporthimself? (Check one)

Partially_ Fully

20. In adulthood, will he be able to plan for and buy hisown clothes? (Check one)

Yes, _ Maybe Yes _ I'm not sure_No21. Will he, as an adult, be able to obtain a driver's licenseand drive a car? (Check one)

Yes _ Maybe yes _ I'm not sure_No22. Will he overcome his muscle handicap so that mostpeople will not notice it when he is of adult age? (Checkone)

Yes _ Maybe yes I'm not sure_ No_23. Will he some day be able to speak well enough to beunderstood by most persons? (Check one)

Yes _ Maybe yes _ I'm not sure_No_

SECTION 3

DOES YOUR CHILD HAVE A PROBLEM IN ANY OFTHESE AREAS? (Check any that apply)1, Walking

_ No problem at allA little problemCan walk with help of braces. crutches,

_ a walker, another personCannot walk at all

2. Dressing himself_ No problem at all_ A little problem_ Has a lot of trouble and needs help

Cannot dress himself at all

3. Feeding himself_ No problem at all

A little problem_ Has a lot of trouble and needs help_ Cannot feed himself at all

4. Toileting himself_ No pi oblem (is completely toilet trained)

A little problem (has trouble at night, sometimes forgets_ during the day)_ Has a lot of trouble, both day and night, but is learning_ Is not toilet trained

5. Playing with other children_ Plays well with other children_ Has a little trouble getting along with other children_ Cannot get along with other children

Never plays with other children

6. Talking_ No problem at all_ A little pro '-^,1_ Has trouble needs help_ Has a lot of trouble

7. Learning_ No problem at all_ A little problem_ Has trouble and needs help_ Has a lot of trouble

SECTION 4 QUESTIONS ABOUT THE MONMOUTHCONFERENCE1. List ages and sex of your children who are attending thisconference.

Age Sex Age Sex1) 4)2) 5)3) 6)

2. Who else in your family is here?1)

2)

3)

3. What did you like the most about the Conference?1)

2)3)

4. What did you not like about the Conference?1)

2)

3)

5. Any suggestions for next year?

6. Any comments?

ucp 37

Appendix No. 16

ucpNATIONAL OFFICERS

LEONARD H GOLOENSONChairman of the Board

JACK HAUSMANPALMER TURNHEIMVice Chairmen

of the BoardGEORGE SCHWEIZER. JR . ESQ

PresidentWARREN F BEER

Exec Vice President

OFFICERS

JACK HAUSMANHonorary Chairman

of the BoardROBERT I ROGIN

Chairman of the BoardLEO HAUSMANPresident

CHARLES E MCCARTHYExecutive Vice President

GEORGE F DtmoowVice President

ALBERT J ELIASVice President

MRS JOSEPH ROTHENBERGVice President

SAMUEL GRANICKTreasurer

MRS MARTIN EATONSecretary

OO/3)90

iNT

OO

CC

0

L1J

U)

DIRECTORS

U)

L415

cotv)

)0:

cc0

wz

0SIONEY CARTER, M D >

Chairman U)J

cccoMW

0

JEROME BELSONHARVEY D CARTER

SIDNEY CARTER. M D.MRS. THOMAS L. J. CORCORAN

HARRY J DELANEYERNEST FLEISCHER

NORMAN FOXMRS JACK GOOOAROMRS JACK HAUSMAN

MARTIN HAUSMANMRS CHARLES D HERBERTMRS WILLIAM C LANGLEY

MISS tOA LEVINEALAN LICHTENBERGSAMUEL R MILLER

MRS ALAN MOSSMRS LOUIS J ROBBINS

FRANCES C ROONEY. JRMARTIN RUBENSTEINMRS PAUL N SAULT

LEON R. SPEARMRS HAROLD STORCH

FREOERICK D WILKINSONMRS ELLIS MINER

MRS MORTON I DAMSONPresident,

Women's Division

PROFESSIONAL

ADVISORY COUNCIL

DONALD CONWELL, M.D.LEONARO DILLER PH D

SALVATORE G ()MICHAEL. PH DHERBERT GOLDSTEIN. PH D

DAVIO HARRIS. M DSTANLEY S LAMM, M D.

RICHARO M LUEIELLMARTIN E McCAvirr. Eo D

MISS RITA MCGUIREMISS MARION MARTIN

MISS FLORENCE MOSHERMiss JANET PINNER

LAWRENCE B SLOBOOY, M D

LESLIE D PAPKEXeCUE/Ve Director

NORMAN H KIMBALLDirector, Fund Raising

and Pub!: Relations38

July 21, 1971

Dear

Some time ago you expressed an interest in attendingour Summer Family Conference at Monmouth College fromAugust 29 to September 2, 1971.

We are now asking the parents of the Early EducationProject who are planning to go to the Conference to meetwith us so that we can tell you about the Conference, thefacilities at Monmouth College and answer any questionsyou have. The meeting will be held on Thursday, July 29that 10:30 a.m. in the Board Room.

This is R very important meeting and I stronglyyou to make every effort to come. If for any reasoncannot attend this meeting, please call me to let me

urgeyou

know.

Please make a note of the date Thursday, July 29th,10:30 a.m. at 339 East 44th Street.

ely yo

( Elsie ThompsonCoordinator, Parent activities

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Appendix No. 17

In preparation for your coming to the Summer FamilyConference at Monmouth College, the following are a fewthings you like to know and a list of items you should bringwith you:

1. Bring equipment your child or children uses or willneed such as crib, crib sheets, wheelchair, babycarriage, stroller, playpen, bed rails, pampers, babyfood, special diet foods or any other special equip-ment they use regularly. IF YOUR CHILD IS ONMEDICATION, BE SURE TO BRING IT WITHYOU.

2. Dress will be casual; shorts, slacks, sun dresses, playshoes, etc. Bring swimsuits bathing caps, towels forthe beach and clothes for cool and rainy weather forthe children and yourself. Bring personal toiletarticles such as soap, toothbrush, toothpaste, washcloth, shower cap, medications, etc. Bring a camerathe scenery is beautiful.

3. If your children like to sleep with or are attached to aspecial toy or blanket, bring it along so that they willbe comfortable in the new bed.

4. You and your family will be housed in a small unitconsisting of bedrooms, toilets and lounge. You willbe expected to make your own beds and keep yourarea neat. The college will do the general cleaning.There are refrigerators in each dormitory building forstoring milk, baby food, etc. Washing machines anddryers are also available in each dorm so bring soappowder for the washing machine.

5. Three meals will be served daily; breakfast, lunch anddinner. Coffee and milk and cookies will be served inthe evening for adults and older children.

6. Your children will be in a day camp program, on thecampus, run by staff members of United CerebralPalsy of New York City from 9:30 A.M. to 4:00 P.M.daily. Babysitters will be provided each evening from7:30 to 11:00. There will be evening activities andentertainment for older children adults.

7. If you so, any member of your family plays a musicalinstrument, bring it along (no pianos, please).

8. Families using United Cerebral Palsy transportation,you will be picked up where your child is usuallypicked up during the year between 1:30 and 2:00.Please be ready with your luggage to leave forMonmouth promptly at 1:30 on Sunday, August29th. You will be notified of your pick-up time, theweek of August 23rd. The Conference ends onThursday, September 2nd and the buses are sched-uled to leave between 1:30 and 2:00. Drivingdirections will be given to families providing theirown transportation.

9. A detailed program telling you about the educationaland recreational events will be given to you on yourarrival at Monmouth College.

IF YOU HAVE ANY QUESTIONS ABOUT THE CON-FERENCE OR IF YOU FIND THAT YOU WILL NOT BEABLE TO ATTEND, PLEASE CALL MISS THOMPSONAT 661-0900, EXTENSION 813.

ucp 39

r

Appendix No. 18

SUMMER FAMILY CONFERENCE

SUNDAY, AUGUST 29THURSDAY, SEPTEMBER 2, 1971

MONMOUTH COLLEGE, WEST LONG BRANCH, N.J.

SPONSOREDBY

UNITED CEREBRAL PALSY OF NEW YORK CITY, INC.

Mr. Leo Meyer, Assistant Executive Director and Conference Dean

Mrs. Berta Rafael Director of Early EducationMrs. Dorothy Nelson Director of Counseling and Direct

ServicesMiss Joanne Nigro, Director of RecreationMiss Elsie Thsonpson Coordinator of Parent Activities

40 ucp

Summer Family ConferenceUnited Cerebral Palsy of New York City, Inc.

Sunday, August 29 Thursday, September 2,1971

1:00 P.M.

2:00

3:00 4:00

5:00 5:15

5:30

8:00 9:00

9:00 11:00

Babysitters11:00 P.M.

Staff ArrivalDining Hall LunchBuses Leave Manhattan, Bronx, Brook-lyn and Staten IslandFamilies Arrive at Monmouth Collegeand UnpackMeeting and Briefing with Parents

(Ground Floor Lobby in EachDorm)

Dining Hall DinnerGreetings Mr. Leslie D. Park, Execu-tive Director

United Cerebral Palsy of New YorkCity, Inc.

Mr. Paul Zigo, Assistant DirectorCommunity Relations, Monmouth

College"Get Acquainted" Pizza Party

(On lawn in front of Student Unionor in building depending on weat-her)

Thomas A. Edison Hail Movie"Family Band"(Optional to adults and children age8 to up at discretion of parents)

Will be Available Every Evening From 7:30

MONDAYAUGUST 30

8:00 A.M.8:30 9:159:30 4:00

9:30 11:00

Dining Hall Staff BreakfastDining Hall Family BreakfastChildren's Schedule See separate

scheduleThomas A. Edison Hall, El

Medical Evaluation DemonstrationDr. Ralph Cobrinik, AssociateMedical DirectorComprehensive Child Care Pro.gram

11:00 12:4512:00 12:45

12:45 1:15

1:30 3:00

3:00 4:004:00

5:307:00 8:30

9:00 11:00

B roo k d al e Hospital Center,Brooklyn, N.Y.

Free Time for ParentsDining Hall Lunch for Children and

Day Camp StaffDining Hall Lunch for Parents,

Other Staff and GuestsWoodrow Wilson Hall Small Group

Meetings by BoroughManhattan Room 102Bronx Room 103Brooklyn Room 104Staten Island - Room 106Spanish Speaking Parents Room

201

Free Time for ParentsParents Pick Up Children From Day

Camp StaffDining Hall DinnerWoodrow Wilson Hall Group Meet

ings with Brothers and SistersGroup I Brothers and Sisters

ages 8 12Group II Brothers and Sisters

ages 13 and upThomas A. Edison Hall - Movie

"Lillies of the Field"

Social Workers and Psychologists are Available ForConsultation During Free Time

Coffee will be Available in Student Union Every EveningBabysitters will be available from 7:20 11:00 P.M.

TUESDAYAUGUST 31

8:00 A.M.8:30 9:159:30 4:00

9:30 11:00

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Dining Hall Staff BreakfastDining Hall Family BreakfastChildren's Program See separate

scheduleThomas A. Edison Hall, El

Home Management and AdaptiveEquipment DemonstrationMr. Robert Bartlett,

41

Associate Professor and Chair-man

Program In Physical TherapyState UniversityDownstate Medical Center,

Brooklyn, N.Y.Mrs. Marion Marx, Physical

TherapistMrs. Jean Held, Physical Thera-

pistUnited Cerebral Palsy of New

York City, Inc.11:00 12:45 Free Time for Parents12:00 12:45 Dining Hall Lunch for Children and

Day Camp Staff12:45 1:15 Diniag Hall Lunch for Parents,

Other Staff and Guests1:30 3:00 Woodrow Wilson Hall Small Group

Meetings by Borough

Manhattan Room 102Bronx Room 103Brooklyn Room 104Staten Island Room 106Spanish Speaking Parents Room201

3:00 4:00 Free Time for Parents4:00 Parents Pick Up Children From Day

Camp Staff4:00 5:30 Beach or Pool Optional6:30 Cook-Out On Lawn Near Dining

Hall7:30 8:45 Woodrow Wilson Hall Group Meet-

ings with Brothers and Sisters

Group I Brothers and Sisters 812Group II Brothers and Sistersages 13 and up

Thomas A. Edison Hall Movie"Boatnik"

Social Workers and Psychologists are Available ForConsultation During Free Time

Coffee will be Available in Student Union Every EveningBabysitters will be available from 7:30 11:00 P.M.

9:00 11:00

WEDNESDAYSEPTEMBER 1

8:00 A.M.8:30 9:159:30 4:00

42

Dining Hall Staff BreakfastDining Hall Family BreakfastChildren's Program See separate

schedule

9:30 11:00

11:00 12:4512:00 12:45

12:45 1:15

1:30 3:00

3:00 4:004:00

5:308:00 10:00

Thomas A. Edison Hall, E-1

Carry-Over of School Program IntoHome Activities

Mrs. Berta Rafael, Director of EarlyEducation

Mrs. Dorothy Nelson, Director ofCounseling and Direct Services

Mrs. Mary Budraitis, Speech Thera-pist, Brooklyn Center

Miss Barbara Progebin, SpeechTherapist, Manhattan and BronxCenters

Mrs. Shelia Russo, Speech Thera-pist, Staten Island Center

Free Time for ParentsDining Hall Lunch for Children and

Day Camp StaffDining Hall Lunch for Parents,

Other Staff and GuestsWoodrow Wilson Hall Small Group

Meetings by Borough

Manhattan - Room 102Bronx Room 103Brooklyn Room 104Staten Island Room 106Spanish Speaking Parents Room201

Free Time for ParentsParents Pick Up Children From Day

Camp StaffDining Hall DinnerPollak Auditorium, Woodrow Wil-

son HallTalent Show :.,y Children

Social Workers and Psychologists are Available forConsultation During Free Time

Coffee Will be Available in Student Union in the EveningBabysitters will be Available from 7:30 11:00 P.M,

THURSDAYSEPTEMBER 2

8:00 A.M.

9:30 12:00

9:30 10:30

1U1 C p

Dining Hall Breakfast for Fami-lies and Staff

Children's Program See separateschedule

Thomas A. Edison Hall, E-1

Services Offered by United CerebralPalsy of New York City

Mr. Leslie D. Park, ExecutiveDirector

r10:30 11:0011:00 12:0012:00

1:30

Parents Fill Out QuestionnairePackingDining Hall Lunch for Families and

StaffDeparture

SMALL GROUP LEADERS

MANHATTAN: Mrs. Joan Farkas, Social WorkerMrs. Berta Rafael, Director of Early

Education

BRONX: Mrs. Dorothy Nelson, Director of Coun-seling and Direct Services (Psycholo-gist)

Mrs. Roza Alexander, Social WorkerSupervisor

Miss Mary Bryant, Social WorkerBROOKLYN: Mrs. Ruth Berman, Social Worker

Mrs. Roslyn Eagle, Psychologist

STATEN Mr. Jerry Hanshaft Social WorkerISLAND: Mrs. Eileen Kadonoff, PsychologistSPANISH: Mrs. Eleanor Younker, Director of Social

ServiceMrs. Cecilia Baldao, Case Aide

BROTHERS Miss Peggy Crull, PsychologistAND Mr. Peter Deri, PsychologistSISTERS: Mrs. Dorothy Nelson, Psychologist

Mr. Robert Schonhorn, Executive Direct-or, United Cerebral Palsy Associationsof New York State (Psychologist)

CHILDREN'S SCHEDULE

SUNDAY Same as Parents

MONDAY 8:30 Breakfast with family9:30 Meet Unit leaders

Pre-Schoolers Match coloredname tags to balloons on trees. (Incase of rain meet in the dormi-tory lobbies).

School Children At the picnictables.(In case of rain meet at theStudent Union)

Music, Dramatics, Crafts, Games

11:30 Preschoolers Clean up at theDining Hall for LUNCH

School Children return to dormsto clean up for LUNCH and put onswim suits

12:00 All Children LUNCH with leadersin the Dining Hall

12:45 Pre-Schoolers In the StudentUnionNap time, movies, storiesSchool Children In Edison HallRoom E-1 Movies, Song Fest

1:45 Pre-Schoolers In front of Stu-dent Union(In case of Rain meet in Dorm

lobbies and Student Union).Wading, and out-door activitiesSchorr; Children In the Pool Area

(In case of rain use the Gym).

Boys: 2:00 3:00 Swimming3:00 4:00 Sports or Hiking

Girls: 2:00 - 3:00 Sports orHiking

3:00 4:00 Swimming

4:00 Parents pick up their children

5:30 DINNER with family7:30 Babies Sleep (Baby sitter on duty

on all floors)3-7 year olds Dormitory lobbies

Bedtime Stories8.12 years old Wilson Hall TalkSession13-19 year old Wilson HallTalk Session

9:00 3-7 year olds Sleep (Baby sitterson duty on all floors)8 and UP (At the discretion ofparents)Edison Hall Movies

11:00 BED TIMETUESDAY Same as Monday, except Dinner will be a

COOK-OUT at 6:30 P.M.Same as Monday, except evening programNo Talk Session tonight7:00 - Rehearse for show8:00 - TALENT SHOW

THURSDAY Same as Monday until noon12:00 LUNCH with families

1:30 - Depart for home

WEDNESDAY-

43

Appendix No. 19

Mr. Leslie D. Park, Executive Director

United Cerebral Palsy of New York City, Inc.339 East 44th StreetNew York, New York 10017

Dear Mr. Park,

Since the first family conference at Monmouth College both Gloria and I havehad numerous occasions to appreciate the remarkable quality of dedicated serviceprovided by UCP for the entire family at so many different levels. Paul has beenattending school at the Brownsville center during the past year. The devotion of histeachers has brought him to achievements which fill our hearts with hope.

It is difficult to describe the great emotional impact last year's confer-ence had on the entire family. For the first time Gloria and I were really ableto see ourselves as part of a larger group with similar problems. Seeing andtalking with these other parents was in itself a revelation. The success ofthese talks and meetings was in no small way dependent upon being made to feelcomfortable and relaxed, and free of worrying about the children. Similarly,Paul's sister and brother had the opportunity to see many other handicappedchildren of all kinds, and to meet their brothers and sisters in a relaxed set-ting with beautiful surroundings. Where else in the world could such an experi-ence be had?

For us, this year's conference was certainly interesting, there is alwayssomething new to learn and the children loved it. On the other hand there isnothing like the first time, and probably one time is enough. Clearly, a numberof first-time attendees were as affected by the conference this year as wewere last year. Mrs. Rafael's extraordinary sensitivity, organizational ability,and enthusiasm, shone throughout both conferences.

We realize now, more than ever, the many ongoings programs UCP sponsors.As a small token of our appreciation please accept the enclosed contributionof $100 to be used by the organization as you see fit.

UC p

Sincerely,

`IX

weowor

Appendix No. 20SEP 10 1971

DEPARTMENT OF HEALTH125 WORTH ST., NEW YORK. N. Y. 10013

Telephone: 566-6150DIVISION OF DAY CARE,

DAY CAMPS AND INSTITU ii0.BUREAU OF CHILD HEALTH

350 BroadwayNew York, N. Y. 10013

Mr. Leslie D. Park, Executive DirectorUnited Cerebral Palsy of New York City, Inc.339 East 44th StreetNew York, N. Y. 10017

Dear Mr. Park:

September 8, 1971

Form-6A

-797/

May we express our gratitude for the opportunity of visiting thoSummer Family Conference at Monmouth College. The transportationarrangements and the hospitality extended to us contributed to a

memorable day.

The skill and enthusiasm of the staff created an atmosphere in whichthe needs of each of the participants (the children, the program,their siblings and their parents) were met.

The agency is to be commended for its ability to provide this unique

service to its families.

MP:RL/eb

Sincerely yours,

77K4J41/14, ba,ce_

kAAt

Ruth Lehr, ConsultantsEarly Childhood EducationDivision of Day Care, Day Camps

and InstitutionsBureau of Child Health

cc: Mts. Joseph Rothenberg, Vice Pres.Mrs. Berta Rafael, Dir. Early Educ. Prof.

VCS 45

eve

GN

46

Appendix No. 21

gi) 4 19711

DEPARTMENT OF HEALTHOFFICE OF ASSISTANT COMMISSIONER1211 WORTS St.. NIP TORE 1001

?elelphosios 100.1210

September 10, 1971

Mr. Leslie D. ParkExecutive DirectorUnited Cerebral Palsy ofNew York, Inc.

339 East 44th StreetNew York, N.Y. 10017

Dear Mr. P

We want to thank you and your staff for the most gracious visit tothe Monmouth College Cerebral Palsy Camp. Mrs. Jacobson and I wereboth very impressed with the general atmosphere and attitude of boththe parents and the children. I feel the area of social support andenvironmental support for these parents is as important es the puremedical aspects, and this has long been a neglected area. It wasextremely rewarding to both of us to see the genuine interest andenthusiasm of your staff with these families.

We enjoyed the small portion of Mr. Bartlett's lecture to the parents,and were glad to see him using materials made by one of our therapists.

If there is anything we can do to further this experience for thesefamilies and any way that we could be of help, please do not hesitateto call on us. Again we would like to commend you and your staff atUnited Cerebral Palsy for this excellent step forward.

Siieerely yours,/

/014-

.--D-Ionna O'Hare, M.D.

Assistant Commissioner

31)4teo.14a....- CE)etta H. Jacob n, Coordinator

Special School Programs

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SOMO/1117)