childhood disability update vol 5 issue 1 1carenidhi.org/cdu_publication.pdf · 2 childhood...

1C H I L D H O O D D I S A B I L I T Y U P D A T E � VOL 5 ISSUE 1

2 C H I L D H O O D D I S A B I L I T Y U P D A T E � VOL 5 ISSUE 1

Philippe Pinel (1745-1826), regarded by many as the father of modern psychiatric care, received hisdegree from the faculty of Medicine in Toulouse, France, and moved to Paris. The Paris faculty did notrecognize a degree from a provincial university. During the years that followed, he earned his living as awriter because the restrictive regulations of the time prevented him from practising medicine. At about thistime, he developed an interest in the study of mental illness. He sought employment at one of the reputedsanatoria for the ‘treatment of insanity’ in Paris. During his five-year tenure there, he researched on mentalillness and disability, and formulated his theories on the nature and treatment of mental illness. Anideologue and a clinician, he believed that medical truth could be derived best from clinical experience andthat therapeutic interventions would, in turn, be guided by the truth.

In August 1793, Pinel was appointed ‘Physician of the infirmaries’ at Bicetre Hospital, Paris. TheGovernor, Jean-Baptiste Pussin, recognizing Pinel’s interest, recruited him as an apprentice. Together,Pussin and Pinel enriched ‘the medical theory of mental illness with insights that empirical approachaffords’. A non-violent, non-medical management of the inmates, which came to be called ‘moraltreatment’ (‘psychological methods’ in today’s parlance) replaced the old methods of ‘bleeding andblistering’. Iron shackles were replaced by straightjackets at Bicetre in 1797 by Pussin and Pinel—thelegend has been commemorated in paintings and prints (as above) which show Pinel liberating the insanefrom chains’. Pinel’s book “Traité medico-philosophique sur láleniation mentale, ou la manie” that wastranslated into English by D.D. Davis as ‘Treatise on Insanity’ influenced psychiatric practice in thenineteenth century. In 1795, he became the chief physician of the Hospice de la Salpêtrière and thewritings that followed, especially a four-part classification system of major mental illness, established himas a founder of psychiatry and a great nosologist of the eighteenth century. His writings may be outdatedtoday, but his work stands as an example of good social research whereby observations and empiricalmethods influence practice and policy. We remember Pinel today as the driving force behind the shiftfrom physical oppression to moral approach in the management of mental illness.

Story of the Issue


Editorial

Dear friends,

Warm greetings from the CDU team!

All of us interested in better care provision and improved practicesfor preventive, promotive, remedial and educational work of childrenwith disability have begun to ask ourselves, "What do we know andwhere do we go from here?"

In the disability sector, the gulf between those who commissionresearch and those who conduct it is no less than the one betweenthe researcher and the ultimate beneficiaries. Strengthening theinfluence of research on policy to help those with disabilities callsfor a critical enquiry and an ongoing dialogue between policymakers,researchers, professionals of different disciplines interfacing withdisability and the end-users throughout the research process.

Promoting research as a means to evidence-based practice andpolicy is the need of the hour. It is not just enough to strengthenresearch capacity and design policy-relevant research projects. Wemust look for robust approaches to evaluate the impact of researchand promote networking between all stakeholders.

Strategic dissemination and repackaging of research findings for arange of audiences is equally important. Let us not forget that allresearch and policy will come to nothing if we cannot ensure thatpeople who live with and work with the children with disabilities,especially the families, have the knowhow. Only then can we bridgethe gap between research and practice, knowledge and application.

In this issue, Suneeta Kulkarni gives us a bird's eye-view of disabilityresearch in India—the priorities, the needs, the approaches, andabove all, the relevance for Policy. Monica Thomas highlights theepidemiological issues and evidence-based treatment rationales. Theimportance of sharing perspective is emphasised by PramilaBalasundaram as we learn what it is to be a parent of a child withdisability. Respecting our readers' requests for information capsuleson the practical care of children with special care needs, we haveaddressed this through the CARENIDHI HealthWatch Series.

We hope you will enjoy reading this issue. Thank you all for yourgood wishes and continued support.

— Editors

Contents

4

13

16

20

22

Disability Research in India—the next 5 years: Where should webe headed?Suneeta Kulkarni

You Don’t Have to be a SupermomPrameela Balasundaram

Epilepsy in Cerebral Palsy:Double Whammy or DoubleChallenge?Monica Thomas

Cerebral PalsyCARENIDHI Healthwatch Series

Help for the school-going childwith epilepsyCARENIDHI Earlycare Series

Cover illustrationSource: Healthlink Worldwide andExchange Poster-'How do we communicatehealth research'.


Disability Research in India–the next 5 yearsWhere should we be headed?

Suneeta Kulkarni

IntroductionAny process involving the growthand development of people andattempting to meet their needs isone of tremendous complexity—additionally so, when there is‘disability’ involved. Even whendisability is considered on its own,we need to acknowledge itsmultidimensional nature. Often, thefunctional aspects/perspective maybe more critical for determiningappropriate service provision anddelivery. Unfortunately, theapproach to disability issuescontinues to be archaic andcharity-oriented. Further, theorientation has not yet moved in asufficiently substantial manner togo beyond the inappropriate deficit(medical) model in an institutionalgarb, based on control vesting inprofessionals and other experts,who, in turn, are focused on thediagnosis and removal ofimpairment.

Although inclusion and aninclusivist philosophy is toutedthrough public platforms, the social

model on which it is based isrelegated to the background duringthe planning and implementation ofspecific initiatives/efforts. The socialmodel bases its orientation in thelarger socio-political situation andhence has a human-rightsperspective. It also combinesbiomedical, social, psychologicaland developmental perspectives; itis community-based and relies oncollaboration with professionals,while ensuring user control andself-determination in the context ofa partnership that deals withsituations through a considerationof individual needs.

Inclusion is a philosophy builton the belief that all people areequal and should be respected andvalued—as an issue of basichuman rights. It also implies anongoing process in which childrenand adults with disabilities have theopportunity to participate fully in allcommunity activities. Researchcannot and must not be anexception.

There is no dearth of policies/legislations/declarations at both

national [for examples,NationalPolicy on Education, 1986,Rehabilitation Council of India Act,1992, Education Policy ofGovernment of India, 1992(Modified), Persons withDisabilities (Equal Opportunities,Protection of Rights & FullParticipation) Act, 1995, NationalTrust Act (National Trust for theWelfare of Persons with Autism,Cerebral Palsy, Mental Retardationand Multiple Disability), 1999, andinternational levels [for example,UN Convention on the Rights of theChild, 1989, UN Declaration onEducation for All, 1990 (JomtienDeclaration), UN Standard Rules onEqualisation of Opportunities forPersons with Disabilities, 1993,The Salamanca Declaration, 1994]that explicitly, or otherwise, focuson the need for inclusion andreaching out to all persons.

The question that remains ismaking the provisions within theselegislations and declarations areality. This is where research hasa big part to play. A lot of effort isdevoted to action, to creating

Dr. Suneeta Kulkarni is a consultant in Developmental and Educational Psychology. Her special interest areas are Parenting, Counselling, TeacherEducation, Training Methodology and Research. She has held key positions in SNDT Women's University, Nirmala Niketan University of Mumbai andis currently honorary visiting professor at JPIP University of Pune. As a mother of a child with special learning needs and as a researcher and a TrainingConsultant, she has over three decades of experience in working with persons with disabilities and caregivers.

R E S E A R C H


schemes, developing interventions,even to implementing these.However, much of these remain atthat level. We need to know whatworks, what doesn’t, and why?Hence, research needs toinform the whole range ofpotentially impacting factorsfrom policy to interventions withindividuals at the grassrootslevel. This will put any/all effortson a sounder footing. With this asthe base, research becomesintegral not only to all disabilityinitiatives, but to related efforts aswell, even at the governmentallevel.

Context of the Tenth FiveYear PlanThe Government of India (GOI) hasimplemented various initiatives overthe years, for example-IntegratedEducation of Disabled Children(IEDC), Project Integrated Educa-tion for the Disabled (PIED), Inclu-sive Education in District PrimaryEducation Programme (DPEP)and Sarva Siksha Abhiyan (SSA).The Planning Commission has re-leased the mid-term report of theTenth Five Year plan and proposesto base the upcoming EleventhFive Year plan on the directionssuggested in this report as well asinputs from key players/stakehold-ers in the development process.

It behooves mention thatdisability still comes under theMinistry of Social Justice &Empowerment, finding specificmention in Chapter 2 - (HumanDevelopment) of the Mid-TermReport of the Tenth Five Year Planonly in reference to ‘InclusiveEducation’. The report observesthat “the strong focus on universalbasic education and health in theTenth Plan, which laid downspecific monitorable targets inthese areas shows a visible shiftin the approach to development

planning.” It further notes that“increased public spending onhealth and education andsuccessful public-privatepartnership for creating socialinfrastructure and successfuldelivery of services is the need ofthe hour.” The Tenth Five Year Planalso recognized education as acritical input in human resourcedevelopment and in the country’seconomic growth. All theseaspects are directly relevant whenconsidering people with disabilitiesand their part/role in the nation’slife and will be referred to againunder other sections of this paper.

Chapter 3 (Social Justice &Empowerment) of the mid-termreport of the Tenth Five Year Planhas a key section related topersons with disability. Severalobservations in this report point tothe kind of research activity that isrequired, as well as specific areasof research, to ensure that Plangoals are effectively achieved. Forexample, Section 3.36 of this reportrefers to the Person with DisabilityAct (PWD Act) of 1995 and therights that people with disabilitieshave under this legislation. Section3.38 acknowledges difficultiesexpressed by the ministry inimplementing suggestions of theTenth Year Plan which advocatedthe introduction of a ComponentPlan for the Disabled in the budgetof all concerned ministries. It alsoindicates the adequate scopeunder the PWD Act to ensure thatboth central and stategovernments pay adequateattention to persons withdisabilities. Under thesecircumstances, monitoring ofpublic organizations and apexbodies [the National Institutes setup to specifically address theneeds of people with disabilities]by DPOs and the carers ofpersons with disability is needed.In fact, Section 3.41 recognizesthe need for monitoring these apex

bodies and the need to strengthenresearch undertaken by thesebodies. Monitoring is needed notonly in terms of the use/misuse offunds but its relevant use includingfor research activities that feed intolong-term development of thecountry. For example, the reportindicates that the total outlay forthe disability sector under the TenthFive Year Plan was Rs 1465.40crores. In the 2002-2005 period, amere 456.65 crores, accounting foronly 31.16 per cent of the agreedoutlay, was spent. Anotherexample pertaining to qualitativeresearch as part of the monitoringactivities can be found in theconcerns related to what activitiesthis amount was then spent on andthe extent to which these arerelevant to meeting the needs ofpeople with disabilities.

Similarly section 3.49 restatesthe mandate given to the Rehabili-tation Council of India (RCI) tomonitor training programmes aswell as promote research in reha-bilitation and special education.This will happen more effectively ifit is done in collaboration with apexbodies, Disabled Peoples's Orga-nization (DPOs) and other profes-sional bodies with none of them as-suming exclusive or even automati-cally greater expertise in these mat-ters.

There are many other ex-amples for potential research workthat emerge from the observationsmade in the mid-term report. Sec-tion 3.48 refers to the productionof Aids and Appliances byALIMCO. While not decreasing theneed to address requirement forproducts such as prostheses,spinal braces, wheelchairs, etc., forthose with physical disabilities;some assessment (research) isneeded of assistive devices thatmight be more appropriate for otherdisabilities.

Section 3.51 of the mid-termreport makes a reference to the

R E S E A R C H


satisfactory work of the NationalHandicapped Finance Develop-ment Corporation (NHFDC) as re-flected in the increased numbersof individual beneficiaries. This is,however, only a part of the picture.Research needs to reflect not onlythe numbers but the qualitativeaspects that underlie these num-bers. In this case, a question thatwould need to be addressedthrough qualitative research is withreference to aspects of satisfaction,that is, with reference to what,whom, why and why not is the workof the NHFDC or other bodiessatisfactory?

Monitoring is itself aresearch activity. However,some consideration is neededregarding what should bemonitored/evaluated. Althoughthe need for research isrecognized, it may needtraining / sensitization ofpersonnel in apex bodies to theneed for different kinds ofresearch if plan goals are to beeffectively achieved.

All this leads basically to adiscussion of why and howresearch efforts related to peoplewith disabilities needs to bestrengthened as well as some ofthe key areas that need to befocused on. Simultaneously, thereis a need to consider a variety ofrelated issues if the benefits of theresearch are to be put to effectiveuse. The following sections take alook at these aspects.

Why is research required?There are many reasons whyresearch needs to form the basisof initiatives and efforts focusing onthe needs of people withdisabilities. These include:

Many initiatives addressing theneeds of people with disabilitiesfocus on action, getting someproject up and running. It is

essential that research beinbuilt into the process so thatlearning/insights from theseinterventions are documentedand lead to better planning andimplementation at all levelsand in all sectors. Systematicresearch will allow us to build onwhat has gone before.

There is often a gapbetween policies andimplementation [often due tovery ‘real constraints’] Researchcan help the process of bridgingthis gap and ensure a holisticorientation. Our issues/problemswithin the disability sector might bedifferent from many other countriesgiven the basic infrastructure andlevel of awareness and sensitivity(or lack of it) even amongstprofessionals. Hence, it, becomesabsolutely essential that resourcesare provided in tandem with eachother, keeping an individual’s totalsituation and overall needs in mind,rather than an attempt to addressa ‘specific problem’ in an isolatedmanner, for example, wheelchairsin places where the terrain is hilly.

Documentation of interventionsis limited, unsystematic and,hence, not always reliable and,often, unavailable. So while thereare many lessons to be learnt fromthe various efforts, these are notshared. Indian culture stillrelies on word-of-mouth to shareexperiences and insight. However,this falls short in trying to make themost of limited resources. Whatthis also leads to is a situationwhere lobbying/advocacy andlegislation efforts will be based onhard-core data, not just the whimof a few persons. In the process, itcan generate political will.

Initiatives/efforts are often putin place based on similarinnovations/ideas developed incultures and countries quitedifferent from India. It is importantto keep in focus our socio-

cultural perspective, which, inany case, includes a tremendousdiversity to begin with and yet hasa unique nature different from manywestern cultures. The Indiancontext (social-economic-cultural)needs to be kept in mind whiledeveloping appropriate technology/interventions. An example could begiven in the context of independentliving. Should one throw out theexisting family support system justbecause ‘independent living’ istreasured in the West? And howindependent can it really beconsidered if it involves the supportof 3-4 paid professional staffavailable to one individual to createa situation where a person can liveaway from parental/sibling homes?Why should one not build on thestrengths of one’s own culturalcircumstances? However, to do thisimplies research grounded in thecultural, socio-economic, evengeographical reality.

Research ensures themeeting of real needs byenabling the development andassessment of a variety ofoptions/alternatives. It is criticalto remember that one solutiondoesn’t fit all situations. Researchcan help create many solutions. Ifproperly disseminated, it alsomakes informed choice possible.This is particularly important in thecontext of making empowerment areality. Families/parents/carers andpeople with disabilities themselvesoften fall back on whatever serviceis available out of a sense ofdesperation.

Research can provide theinformation/data that will allowus to plan for the long term withprojected needs in mind—interms of numbers that will needthese services/interventions, aswell as the kinds of services thatwill be required.

Among the other advantagesof strong research documentation,

R E S E A R C H


one should include:

� Avoiding the duplication ofefforts

� Learning from each othersefforts/insights

� Making networking andcoordination easier

� Making the use of limitedresources more likely

How can research effortsbe strengthened?An underlying question related tostrengthening research activitiesdeals with issues pertaining toorientation as well as the effectiveutilization of limited researchresources. It calls for therecognition of several ideas.

One piece of information feedsinto the other. Seeminglyindependent research projectscan be combined to add to thetotal effort related to disability moreeffectively.

Different kinds of researchneed to be commissioned—qualitative and quantitativeresearch in tandem with eachother need to be encouragedbecause these answer differentquestions. It also takes intoaccount our cultural context(solutions relevant to our situation)in all its diversity. We speciallyneed to bear in mind thecompounding factors (for example,poverty and other economic/socialdisadvantages, multiple disabilities,gender, invisibility stemming fromreduced ability to speak for oneself in a way that is easilycomprehensible to most otherpeople, reaching geographically farflung areas, particularly those thatmay be experiencing alienation).More coordinated and integratedresearch across associated issuesin gender, social development andhuman sciences is needed, movingbeyond a predominant focus on

health or social welfare aspects.Both quantitative and participatorycomponents need to be adopted inresearch methodology to ensurethat different dimensions ofdisability are accounted for.

Cross disability as anorientation needs to underlieresearch efforts, whilerecognizing specific needsassociated with specificdisabilities. This is essential;otherwise all talk of inclusionwill just be 'hot air'.

Including disability studies inthe regular course of the trainingand practice of the helpingprofessions is recommended.Limited resources/funding/energy/untrained researchers are amongsome of the constraints and thisarea needs strengthening in termsof training of researchers as well.

Building the social model witha developmental perspective intoresearch efforts rather than thedeficit-medical model is essential.Therefore, research teams thatinclude the perspective strengthsof different disciplines/organiza-tions are needed. Research effortsin India need to stem from moresystematic, planned effort ratherthan being only insight, based. Itis also necessary to rope in peoplefrom outside the disability sectorand work with them as partners.Simultaneously, an interdiscipli-nary perspective is needed.

Prioritization exercises mayprovide a good/valuable startingpoint for each organization, particu-larly for those that are directlyinvolved with disability. Based onthis they can seek collaborationwith other organizations with simi-lar interests, allowing for the pool-ing of limited resources/funding.

What areas need to befocused on?Systematic research has thus far

been woefully neglected. Whilethere is an ongoing outcry aboutthe inappropriateness of ‘western’models and findings, there appearsto be little will to ensure that aknowledge base emerging fromwithin our reality is developed. Thefew isolated research efforts tendnot to be disseminated, furthermaking it difficult to arrive at anygeneralized ideas that could suitIndian conditions. Almost any areathat relates to living would beappropriate to study, but one muststart somewhere.

This section provides alisting of some of the areas inwhich research is needed on apriority basis, and that can beundertaken by differentorganizations independently orin conjunction with othersdepending on their particularfocus of work and expertise. Thelisting does not claim to beexhaustive, nor are the categoriesexclusive of each other, but theydo hope to point out essentialareas of research that can feed intoservices, interventions as well asfuture planning with a view to bringinto reality ‘empowerment of thedisabled’.

Good Practices� Strategies for inclusion (social

as well as academic/workrelated)

� Networking strategies

Accessibility� The meaning of accessibility

in the context of different kindsof disabilities

� Accessible public environ-ments/environmental design

� Architectural considerations/designing of appropriate interi-ors/removal of architecturalbarriers

� Assessment of accessibilityvia access audits

� Transport

R E S E A R C H


� Safety issues� Adaptive technology, focusing

on enhanced personalmobility

Services and Facilities� Service models–Rehabilita-

tion–innovative strategies inservice provision

� Interventions—(physical/eco-nomic/psychological/educa-tional/social) and the combina-tion of these that is required indifferent situations

� Assistive technology researchand universal design—Assisted communication strat-egies/techniques/educationalaids and appliances/assistivedevices to aid mobility/verbal/non-verbal communication,design changes in articles ofevery day usage, etc., with aview to develop cost-effective,user-friendly and durable aidsand appliances; appropriatehardware and software suitablefor persons with disabilities toensure access to informationtechnologies

� Resource support includingsports, recreation and culturalactivities

� Research on emergency pre-paredness, especially alertingtechnologies, for people withdisabilities

� Family/Carer Support Services—Supporting families/caregivers of persons withdisability may be particularlyimportant in a country likeIndia which, while it may nothave very many materialresources, is rich in peopleresources. But to ensure thatthese are utilized anddeveloped to their fullestpotential, it is essential that wefigure out how they can beempowered. In this context, weneed to consider thedevelopment of Individual

Family Service Plans (IFSP)Education and Training

Opportunities� Lacunae in training areas as

well as strategies for trainingfor people with disabilities

� SSA – Effective and innovativestrategies/areas/ways of usingthe funds

Training of Trainers/

Rehabilitation Workers/

Service Providers� Teacher education including in

—service teacher training� Training and preparation of

service providers for handlingchildren with special needswithin the context of existingconstraints of the educational/social system

Employment and

Vocational Opportunities� Data bases of existing employ-

ment opportunities� Employment issues for per-

sons with rare (low-incidence)disabilities

� Employment in the changingworld scenario—types of jobs,pace, complexity, mobilitywithin workplace, access tomultiple technology as relatedto developing/emergingemployment opportunities

Long Term Care -

Living Conditions� Assisted Living and other

models —group homes/insti-tutional care/facilitated familyliving/cooperative family living/ independent living/Participa-tion and community living

� Guardianship issues includinglimited guardianship

� Impact of ageing on peoplewith disabilities—Ageing anddisability

� Health issues in the contextof developmental stages, par-

ticularly in the ageing processHealth (including

Mental Health)� Health issues and alternative/

complementary treatment/medicine where appropriate

� Prevention/early detectionIssues related to ‘prevention’research particularly for dis-abilities that can be preventedwith health care [in earlystages of pregnancy/earlychildhood] and educationalinterventions

� Comorbidity–dealing with/fa-cilities available for care ofpeople with more than one kindof disability across types e.g.physical impairment in combi-nation with mental illness/strategies required for dealingwith such situations

� Coping with health-relatedstress

� Research on telehealth,telemedicine, or

tele-rehabilitation

Background/Foundational Research:Legislation/PolicyResearch� Review of schemes/legislation/

training programs (An exampleof a specific project: presenceof disability-related informationin the training of professionalsin related/allied fieldscounselors / teachers /HD/Medical Health practitioners/psychologists/psychiatrists)

� Need assessment from theperspective of people withdisabilities and their families

� Prevalence of disability,including related needs tofacilitate effective planning ofservices/ facilities—what,where, how, when

� Creating data bases ofresources/research findings/

R E S E A R C H


generating statistics about theemployment status of personsby the type of disability espe-cially for those who becomedisabled due to accidents andother disasters

� Prevalence studies/etiologicalstudies/genetic research tominimize the incidence of dis-ability—causes of differenttypes and the level of incidenceof disabilities; monitoring bud-get allocations at both stateand central government levels,monitoring legislation—theresearch aspect—evaluating/reporting on the status ofimplementation and enforce-ment of key laws

Associated/

Overarching Areas� Gender: Women and disabil-

ity (triple discriminations)Disability and sexuality

� Poverty and disability� Community Health issues

[HIV/AIDS]� Humanitarian situations and

conflict� Institutional strengthening/ca-

pacity building� Cultural aspects of disability/

social attitude and behavioralpatterns to persons with dis-abilities

� Strategies for communitymobilisation

The purpose for research in theseareas could be varied, ranging fromexploratory studies in yetuncharted areas to replicabilitystudies to confirm findings incontrolled situations. Somestudies may need to draw uponcomparative research, to gaininsight from differing circum-stances. Some may need to becross-sectional, others longitudinaldepending on the kind of datasought and the interventions itseeks to feed into. Yet others mayexamine ‘good practices’ to provide

guidelines for future interventions.

What kind of research isneeded?It is obvious from the listing of areasthat need to be researched, as wellas the purpose that might underliethese research studies that no onekind of research will fit the bill.There is scope, and a need for allkinds of research! What would becritical to incorporate into theresearch process is that itaccesses the advantages of bothqualitative and quantitative researchmethodology in order to arrive atanswers to key researchquestions. Some studies may fitthe category of Action Researchand have a more specific goal fordetermining minute solutions tomicro-level issue/problems.

There could also beresearch that is more broad-based, developing from theneed to plan appropriateinterventions; many prevalenceand need assessment studiescould fall into this category.Similarly, there can be policyresearch that may use prevalence(data surveys) and needassessment data along with othertrends and data available frommonitoring and review exercises.Much of this can be built intoongoing governmental surveys. Forexample, one of the goals of theTenth Five Year Plan was to haveall children in schools by 2003, andall children to complete five yearsof schooling by 2007. The mid-termreport indicates that the enrolmentdrive launched during the secondyear of the Tenth plan to bring allchildren in the age group of 6-14 inschools has resulted in a reductionin the number of out-of-schoolchildren from 42 million at thebeginning of the Plan period to 8.1million in September 2004. This isa good case in point to demonstrate

the need for ongoing surveys withinbuilt questions pertaining todisability. It would be interestingand useful (therefore essential) tonote what has been the reductionin the number of out-of-schoolchildren who are disabled. Otheruseful monitoring exercises couldrelate to the IEDC and otherschemes in terms of not only theextent and amount of the outlay butalso its emphasis and the specificschemes that are sought to becreated through these, as well asthe efforts of the apex bodiesspecially created to address theneeds of these target groups.

It would also be important tohave basic research, which maynot have an immediate use in mindbut is essential for understandingcertain phenomena, occurrences.Genetic research would be onekind to fit this need. Alongside this,the need for meta analyticresearch cannot be under-estimated, drawing uponexisting data and arriving atadditional insight by putting itthrough an analysis fromdifferent perspectives than theoriginal ones.

It is, therefore, importantthat research become proactive,systematic and be based ongenuine collaborations andpartnerships with individualswith disabilities, community-based provider networks andother professionals.

Who can help carry it out?Research needs to be takenseriously. Not only does that meanthat people undertaking researchneed to be trained in researchskills, it also means that they needto be open to different researchmethodology depending on the kindof research being undertaken. Arelated aspect is finding personsand organizations who understand

R E S E A R C H


the worth and relevance of researchand are, therefore, willing to fundthe research project, and/or providetechnical expertise. Here too,networking strategies are helpful.� Professionals/researchers� Premier technological

institutes� Sponsors – Government,

corporate or NGOs

What related issues needto be considered fromthe outset?In the process of determining whatareas need to be researched andwhat methodology is appropriate inthat context, there is another keyissue that requires considerationsimultaneously. One of the keyobstacles associated withresearch is that it often becomesan academic exercise,gathering dust on theresearcher’s shelf. If there is agenuine desire to do researchand use its findings to feed intothe empowerment of peoplewith disabilities, then a host ofrelated aspects need to beworked out in conjunction withthe process of planning andcarrying out the research. Someof these areas are listed ahead.

Participation of peoplewith disabilities in theresearch process

Who are the

stakeholders?Any discussion about researchissues would be meaninglesswithout considering the role thatpeople with disabilities themselvesneed to play in this process. Apartfrom recognizing their very directinsight into what affects their livesand, therefore, their contribution todetermining relevant initiatives,

which can feed into research effortsat every step of the way, there mustbe recognition that they are theprimary stakeholders. The “nothingabout us, without us” slogan needsto be lived.

However, the concept ofstakeholders needs to include thefamilies of people with disabilitiesas well. They are affected too. Evenmore importantly, their empower-ment will help overcome some ofthe constraints of the socio-economic-cultural situation, andmake it possible to provide manyof the required services in a caring/committed environment andhelp bridge gaps betweenresearch plans, findings, andimplementation.

Where can they

contribute?The participation of all thesestakeholders (including families) inresearch is possible and neededin determining priorities/needs,sharing perspective, providinginformation/data, receiving resultsof research and finally inimplementing these findings.

Planning and Preparationfor Relevant Research

During the planning

processThe research process begins withplanning. Several aspects need tobe considered to ensure thatresearch that is undertaken isusable and relevant. Prioritizationexercises need to be conducted atthe outset by each concernedgroup/organization. This can thenlead to proactive commissioning ofrelevant research studies. It is,however, necessary to avoidcompartmentalization of research.It is also necessary to consider theinteraction between variousresearch issues. This

acknowledges the need forsustained effort over a period of timerather than moving on to other‘studies’ on the completion of‘isolated’ projects. Further, it canlead to relevant project follow-ups.Related supportResearch requires a great deal ofcombined effort and it is appropriateto seek the support of relatedagencies to function in acoordinated manner. It involves theidentification of and deliberateseeking of partnerships/networkingwith ‘non-disabled’ but sensitiveprofessionals/persons/NGOs. Thetraining of researchers is also amatter of concern and needs to beaddressed directly to ensure ‘goodquality’ research.

Dissemination ofresearch findingsBefore research findings can beimplemented, they need to bedisseminated. This is a criticalarea that unfortunately does notreceive the attention it warrants. Inthe process, research becomesirrelevant.

To whom should thefindings be disseminated?A major obstacle in the use andapplication of research findings isthat these never reach theaudiences/target groups that needand could use them in their ownefforts with people with disabilities.It is important the findings aredisseminated to all concerned.Significant target groups includepeople with disabilities, families ofpeople with disabilities,professionals working withthem, academic communities,government officials particularlythose responsible for ensuring thatschemes (economic/educational,

R E S E A R C H


etc.) reach the people for whom theschemes were developed. Policymakers, media, industry(particularly with reference toassistive technology) citizens atlarge could, also benefit from thedissemination of research findings.

In short, findings need toreach all of society. However,dissemination needs to becarried out in different ways toensure that the informationreaches the concerned personsin ways that it can be used. Thisalso involves sharing success aswell as ‘failure’ with an analysisof why an intervention/strategy/initiative/scheme did or did notwork.

How should researchfindings bedisseminated?Dissemination also needs to beconsidered from the perspective of

the medium/media to ensure thatit reaches all the above targetgroups in a manner that isunderstandable and usable bythem. There are numerous ways inwhich findings can bedisseminated. These include print(reports, booklets, brochures,posters), television and other audio-visual media (public servicemessages, chat shows, newsprograms), radio, web-basedmaterial (joining egroups and webcommunities), and seminars,workshops for both dialoguing/planning and subsequent sharingof research.

In conclusionIt is essential that thegovernment at both state andcentral levels assume theultimate responsibility forpromoting comprehensiveresearch on all aspects that canmake a difference to the living

conditions of persons withdisabilities. However, it isequally critical that people withdisabilities as well as theirfamilies and other professionalsin this field not wait forgovernment initiatives but takean active role in furtheringappropriate research andensuring its implementation.This will mean taking on theresponsibility for many of theresearch initiatives themselvesas well as monitoring efforts inthe public domain.

This article is based on the original notefor discussion on the XI Five Year Planprepared by the author on behalf of theworking group for the Ministry of SocialJustice and Empowerment, Governmentof India. As we go to print, we learn thatthe XI Five Year Plan is in the final stagesof drafting , ready to be in the publicdomain. We hope the Plan meets theexpectations of the Disability Sector withimplementation criteria better than in theearlier Plan. – Editor

R E S E A R C H

DECLARATION

Statement of ownership, registration and other particulars about the publication.1. Title : Childhood Disability Update2. Registration No. : DELENG/2000/8943. Place of Publication : New Delhi4. Periodicity : Bimonthly5. Publisher’s Name : Sunanda K (for CARENIDHI)

Nationality : IndianAddress : A-34, DGS Appartments, Plot No. 6 Sector 22, Dwarka, New Delhi-110045

6. Printer : Sunanda K (for CARENIDHI)Nationality : IndianAddress : A-34, DGS Appartments, Plot No. 6 Sector 22, Dwarka, New Delhi-110045

7. Editor : Sunanda KNationality : IndianOffice Address : V-15, Green Park Extension, New Delhi-110016, India

I, Sunanda Kolli, hereby declare that the particulars given above are true to the best of my knowledgeand belief. (Sd/- Sunanda K)


When a woman conceives andlearns that she is going to be amother, the joy, the exhilaration,the new experiences, her dreamsand her fears are hers alone. How-ever close her husband and familyare to her, nothing but nothing canever take away the sensations onlyshe will go through. The ninemonths of gestation is againuniquely a journey only she willexperience. It is a journey in thereal sense, both for herself and thebaby in her womb replete with greathappiness as well as fraught withdangers. The bond each mother tobe forges over the nine months withher unborn child is a secret andcherished experience. When thebaby is born and everything is well,the whole experience is soon putaway and life now revolves aroundthe new wonder in her life.

But there are times wheneverything is not well. There areproblems with the baby. Mostly thishappens when the baby is not whatthe world has come to expect as'normal'. This can be anythingfrom a cleft lip, minor physicalabnormalities, which can becorrected surgically, or a majordeviation, a severe mental orphysical disability, which willresult in a handicap for the restof the baby’s life. Now the motherfaces a new situation. It is she,

who bears the major impact ofhaving given birth to a baby theworld sees as less than perfect. Herhopes and dreams are shatteredand she is now full of uncertainty,fear, apprehension and the eternal“if only”. Obviously the more severethe disability, the more the traumaand the angst.

Of the many problems one isheir to in this world, having a babywith disability and in particular ababy with intellectual disability isthe most poignant."Can youimagine that there are parents whomourn if the baby is dark or if it’s agirl when they wanted a boy?”asked a mother of a child withmental disbility. Like a pebblethrown into a pool of still waters,which causes ever-wideningripples, such a birth creates ripplesof impact which affect not only thebaby itself but has far-reachingeffects. The grief that follows isnormal and must be indulged in.The mother who is suffering shouldcry. Pray. Seek other support iffamily and husband are notsufficient. Close friends? Certainly.Find a kindly shoulder to cry on.No one expects a mother who hasjust had a baby with disability tobe a super mum, knowing all theanswers and facing the world witha stiff upper lip. Nor should weexpect to see super dads. The

process of grieving is necessaryand cleansing. There is no shamein it and it certainly does not meanthat one is unable to cope.Courage, patience, perseveranceand many other skills will comelater to keep pace with the needsof the baby as it grows. It isimportant, however, not to give into self pity. A majority of motherslearn amazing coping skills,something no university in the worldwill teach except that most taxingof all teachers—experience.

Well meaning people tell herto be brave. Be strong. Havecourage. Without saying so in somany words they are actuallysympathizing with her. Why? Isthe new baby with a disability notto be loved? Is the new babyincapable of evoking the maternalinstinct to love, cherish and protect,even if disabled? Has the mothercommitted some crime for whichthere can be no forgiveness? Is themother the one to be blamed? Inmany families the birth of a babywith disability or even at risk fordevelopmental delay is often seenas the work of the evil eye, or karmaand in our country many suchsuperstitions and myths still holdsway. Surprisingly non-acceptanceis not confined to uneducated anduninformed parents but cuts acrosseconomic and social levels. Even

Prameela Balasundaram is the Founder Director of SAMADHAN, an organization working with mentally handicapped children in Delhi. With a vastbody of experience in Dramatherapy, Counselling, Administration and Management , the focus of her work has been to effectively link disability, povertyreduction and women's empowerment in the low socio-economic areas. She has won awards for service and Innovation from The Handicap Internationaland the World Bank. She is the third Vice President of the Asian Federation for the Mentally Retarded and has authored several articles for national andinternational journals as well as the recently published book 'Sunny's Story' (2005).

You don’t have to be a supermom

Prameela Balasundaram

P A R E N T I N G


P A R E N T I N G

in this new age of rapidtechnological advances and aneducated society rapidly becomingglobal and savvy, we have heard offamilies in which the mother isblamed. The father often goes freeof all blame. Loving couplessuddenly find themselves intwo different camps as it were. The'not-my-fault' and 'it's-your-fault'camps. When this happens, it isalmost certain that the way aheadis not going to be smooth. The joysof a new baby in the house areovershadowed with agonizingquestions about what went wrongand why? Needless to say, suchsituations are not universal. Thereare husbands who are extremelycaring, sensitive to and under-standing of the trauma, which hiswife is facing. There is a mutualsharing of grief, of recognizing theneed to comfort each other andoften results in a new and renewedcloseness, which enhances therelationship. Nor do all mothers-in-law subscribe to the stereotypedHindi film version we have come torecognize as peculiarly Indian, theunwarranted bias for her son, whoin her eyes can do no wrong.

Doctors are often the first tobreak the news of the child’sdisability to the parents. It is notan enviable task at all. In busyhospitals, with a waiting line ofpatients, many doctors do not findthe time to deal sensitively withsuch parents. This is perhapsunderstandable. When parents/mothers with children withdisability are rudely awakened totheir situation by doctors who didnot give them quality time, thesituation is aggravated a hundred-fold. Why, I wonder, cannot wehave a counsellor or a psychologiston call, especially in pediatricclinics so that parents can accessimmediate and professionalcounselling and emotional supportfrom people who know what it is to

face such a situation. New parentsneed an experienced person willingto give a patient listening to theirfears and help them confront theall important question,"What do wedo now?"If parents are not fortunateenough to have someone like this,very often they become prey toquacks who benefit from thesituation of inexperienced anddesperately anxious parents to getsome support from somewhere.

Working in the low socioeconomic colonies of Delhi, one isall too familiar with stories of howmothers were asked to give theirbabies vitamin supplements foryears with the promise that thechild will soon improve. Others goaround from temple to mosque, tochurch to gurudwara seekingtalismans and miracle cureshoping for ‘healing', when the factis that mental handicap is notsomething that can be cured but a'condition' which needs to bepatiently and lovingly dealt with.Sometimes well-meaning familymembers and friends try to alleviatethe fears of a new mother by sayingthat some children develop late andso there is nothing to worry about.Midwives, who still deliver about60% of babies in India, also needto be trained in counselling skills.While they are truly knowledgeableabout the process of delivery, theyneed to be able to recognize theirown limitations and make referralsto professionally qualified doctorsif the need arises.

The best support a new mothercan get is another older, moremature mother, who has faced asimilar situation and has come outwhole, overcoming a traumatic andpotentially painful experience.Having a child with disability is notthe end of the world. There aremany women out there who haveovercome their initial apprehen-sions and hesitations to emergeconfident and knowledgeable fully

aware of the difficulties ahead butresolved to face them as theyoccur. Meeting such women andopenly discussing hidden fearshelps a new mother realize that shetoo can cope and can handle theresponsibility of bringing up a childwho will need more than the usualresponsibilities of caring.

The most agonizing questionmany new mothers ask themselvesis whether somehow it was theirfault. I know of some mothers whotrace the birth of the child withdisability for partying the nightbefore the baby was born, forforgetting to take medication andeven for looking at the new moonwhen they were pregnant. Suchself-flagellation could lead tounnecessary recriminations, selfpity and, most dangerous of all, awithdrawal from social life. Theygive in to the feeling that in somesubtle way they are no longer likeother women. The reasoning is thatif I can have a child with disabilitythen maybe something is wrongwith me. This is not true at all. Theother reason for loss of confidenceis that the world will now see them,as the mother of a child withdisability She is not like the othermothers. This is absolutely trueand something one should cometo terms with. Of course, a motherwith such a child is not like theother mothers. The patience, theperseverance and the couragerequired of her are much higher thanthat of mothers of non-disabledchildren. So, mothers of childrenwith disabilities are themselvesvery special.

Sometimes the most nerve-wracking experience new parentswill have to face is the change inthe attitudes of people they thoughtwere their friends, I had a friend,the mother of a Downs Syndromeson, who would make it a point tointroduce her son to anyone whovisited her, saying brightly and


loudly "This is my son. He ismentally handicapped." Thesilence that followed was painful.Her visitors would not know how toreact to this. Should they makesympathetic noises or false brightexclamations? What did you asksuch a parent? You could not askabout his school because you knowhe does not go to a school or if hedoes it is a Special School. Youcannot talk about his skills, thegames he plays. You cannotcompare your child who isobviously doing things, which thischild is not or may never do or anyof the many different thingsmothers of children with nodisabilities talk about. It was quitesome time before my friend learntthat she was making excuses forher son when she did not need to.So such introductions were notnecessary. Everyone can see thatthe child has a disability and theywill respond according to thedegree of their awareness andknowledge about disability. Tothose who do not have suchknowledge perhaps the parents ofthe child with disability can teachthem and share with them what itis to be such a parent. Theresponse is always one ofunderstanding and even admirationfor a woman, who lives a normallife, being wife, mother to her otherchildren and also nurse, educator,doctor, caregiver and, in fact,

everything which her special childwill require of her.

So mothers of non-disabledchildren should not feelembarrassed at all. Remember thatthis can happen to anybody and itis in no way an indictment of eitherthe mother or the father. Nor shouldthey wonder how to reach out tothe new mother. Genuine care andconcern for the mother and thechild will automatically translateinto correct attitudes andacceptance regardless of theextent of the child’s disability. Ifmothers are rejecting or negativeabout the child with disability, thenit is an opportunity to offeremotional support. One can try tochange the mother’s attitude bygentle suggestions and a genuinelysupportive listening. Above alllisten. Patient listening is both askill and an art.

It is common and perhapstouchingly human to question God.

Why did God allow this to happen?The immediate reaction of manymothers is "Why me? Why us?"She knows of so many others whohave had babies with absolutely nodisability. It is not fair is it? Whydoes God allow such things tohappen? Life is full of difficultquestions like this, which wecannot possibly answer. I don’tthink that God sends us babies withdisabilities as a punishment or atest but to give us a chance to growin love, perseverance andcompassion. To learn what it is tobe a parent of such a child. It bringswith it rewards unknown to parentsof non-disabled children. Eachmilestone reached is an occasionfor celebration and special joy. Notsomething which is taken forgranted since expected. Parentshave a choice. To accept and lovethe baby and give the baby all theirlove and everything they have justas they would have if the baby wasnot disabled in any way, or to denylove and acceptance because thebaby is not like the other children.It does begin with large tracts oftime when we waver and undergoan immense inner struggle. Whenwe recognize the situation in whichwe are placed and realize the depthand the significance and thepresence of the divine will, it willbe neither rebellion, rejection norflight but a movement guided byGod.

P A R E N T I N G

"Heaven lies at the feet of mothers"


Cerebral Palsy (CP) is a chronicneurological disease caused by aninjury to the brain at some stage ofits development. CP is a staticencephalopathy, a non-progressivecondition, though the associatedproblems such as epilepsy mayfluctuate in severity. The conditionwas first described in 1867 byWilliam Little, a London-basedorthopaedic surgeon, who wrotethat the act of birth does occasion-ally cause a serious imprint uponthe nervous and muscular systemsof the newborn, and described thecondition of spastic rigidity due toasphyxia neonatorum. The epony-mous name Little's disease wasreplaced by the term “cerbral palsy”by William Osler in 1882. Achange of name, notwithstanding,the impression persisted that CPresulted from difficult delivery andasphyxia. This impression lastednearly a century, but recentdecades of research suggest thatobstetric risk is not the only factor,and that CP results from multiplecauses such as vascular, infectiveand genetic causes, which mayaffect the brain in different stagesof pre-, peri- or post-natal develop-ment. However, there is no place

Epilepsy in Cerebral Palsy

Double Whammy or Double Challenge?

Monica Thomas

for obsetric complacency, asstudies from India (Singhi1, Aneja2)suggest that birth asphyxia doesplay a significant part in the aetiol-ogy of CP. A study from Turkey byOztuk3 enumerated causes suchas prolonged labour, difficult homebirths, birth asphyxia, meconiumstained liqour as being responsiblefor CP. The Saudi Arabian study byAl Sheri4 recommends that im-proved healthcare services wouldresult in fewer CP patients. It isevident, therefore, that even thoughCP has a mutifactorial aetiology,obstetric vigilance cannot berelaxed, as a definite proportion ofCP results from obstetric causes.

CP affects all races and itsincidence is 2 to 2.5 per 1000 livebirths, which makes it a leadingcause of childhood neurologicaldisease, requiring huge resourcesand posing a challenge with theneed for cohesive multi-disciplinarymanagement. A diagnosis of CP ismade when a child presents withdevelopmental delay, motorweakness or disorder of movementand posture. A variety of causessuch as chromosomal anomalies,cerebral malformations,maturational abnormalities,

infections, prematurity andhypoxic-ischaemic injury result inCP. The interplay between thenature of injury and the time ofinsult to the maturing brain resultsin different grades of severity aswell as different topographicentities such as spasticquadriplegia, spastic hemiplegia,spastic diplegia or ataxia. Acommonly associated problemwith CP is that of epilepsy. Thenumbers vary (Singhi 35.4%;Carlsson5 38%; Zafeiriou6 38%,Kulak7 41.4%), but at least a thirdof children with CP have epilepsy.Epilepsy in cerebral palsyincreases the magnitude of analready burdensome chronicdisease, complicates learningdisability, affects logistics of travel,raises fears of bodily safety andadds to the cost of care.

Different types of seizures areseen in CP—generalized, partialonset with generalization,myoclonic seizures, infantilespasms, startle epilepsy, touchreflex epilepsy, etc. Following aresome features of epilepsy in CPas described by variousauthors:� Seizures in CP have an early

Dr. Monica Thomas is a Neurologist at St. Stephen's Hospital, with over two decades of experience in the field and several publications to her credit.She has a special interest in Developmental Paediatric Neurology. In keeping with the motto of the hospital 'in love serve one another', she strives to reachout to persons with Cerebral Palsy and allied conditions both within its portals and in the community.

CLINICAL PRACTICE


age of onset, with history ofneonatal seizures.

� Epilepsy most commonlyaffects children with spasticquadriplegia and mental sub-normality (Kwong8).

� The severity of CP is relatedto increased risk of epilepsy—71 % in CP with learning dis-ability (Wallace9).

� A probable correlation of par-tial seizures with the hemiple-gic CP and a lower risk of epi-lepsy in spastic or ataxicdiplegic CP is reported in sev-eral studies.

� There is a high incidenceof West syndrome in childrenwith spastic quadriplegia(Hadjipanayis10).

� Prognosis for control is poorcompared to children who haveepilepsy without CP.

� Quadriparesis, mental retar-dation, myoclonic epilepsy arepredictors of poor response totherapy.

� Polytherapy, with additiveside-effects, is usually requiredfor seizure control.

� Factors associated with oneyear seizure-free period in-clude normal intelligence,single seizure type, controlwith monotherapy, and CPpattern of spastic diplegia(Kwong8).

To highlight a few studies, par-ticularly those from Northern India,Singhi1 from P.G.I. Chandigarhevaluated 105 children with CP andepilepsy, and compared them witha control group of 60 children withCP and no epilepsy. The majority(60.95%) had seizure onset beforethe age of one year; the infantilespasms and myoclonic seizureshad an even earlier onset. The sei-zures were controlled in 58.1%,with polytherapy required in lessthan half the children. The highestincidence of 66% epilepsy was in

the children who had spastichemiplegia, the intermediate 42.6%in children with spastic quadriple-gia while the lowest incidence of15.8% was in the spastic diplegiagroup. This probably reflects ahigher incidence of epilepsy withthe CP group perhaps due to agreater cortical damage.

In the study from Delhi byAneja2, 86 patients were followedfor a period of 12 months. The pa-tients with quadriparesis weremore likely to have generalizedepilepsy, and a half of this grouprequired more than two antiepilepticdrugs for seizure control.

Patients with hemiplegia hadlocalization-related epilepsy in83.3% of cases. A multivariateanalysis suggested thatquadriparesis, mental retardation,myoclonic epilepsy were predictorsof poor response to antiepilepticmedication.

The diagnosis of epilepsy ismade after obtaining a detaileddescription of the seizures be-cause the epilepsy has to bedifferentiated from dyskinetic/dystonic posturing in childrenwith athetoid/ataxic CP, stereo-typed movements in childrenwith learning disabilities,breath-holding spells, as well asother non-epileptic paroxysmaldisorders.

InvestigationsInvestigations do have a role in themanagement of epilepsy in childrenwith CP, although a good clinicalevaluation will suffice where facili-ties are not available.� EEG—an interictal scalp

record may corroborate clinicalsuspicion of epilepsy, identifypossible epileptic syndrome,confirm epileptogenic focus andpick up subclinical discharges,which may be compoundinglearning disability.

� Video-EEG, where available,may differentiate epileptic fromnon-epileptic movements.

� Telemetry provides a longerrecording, if required, for confir-mation of epilepsy or localiza-tion of focus.

� MRI is a sensitive anatomicalneuroimaging modality. Thelesions identified are brainmalformations, cortical-subcortical lesions,abnormalities of periventricularwhite matter associated withhypoxic-ischaemic injury. Thepattern of MRI abnormalitymay give a clue to the nature andtiming of brain insult, which ishelpful to identify cause andplan prevention of CP, wherepossible. MRI may be usedto identify a resectableepileptogenic focus.

� CT, as a modality, is lesssensitive than MRI, but is lessexpensive, and has the addedadvantage of shorter imagingtime. Uvebrent11 from Swedenfound in children with spastichemiplegia, a good correlationbetween clinical severity andCT findings, a normal CT beingassociated with a milddisability. Unilateral ventricularenlargement with moderatecortical/ subcortical cavities maybe associated with severehandicap and mentalretardation.

TreatmentPrinciples of treatment are theusual principles applicable to themanagement of epilepsy, but madeslightly complex, given the age ofthe child, associated mentaldisability, and physical handicap.The choice of the antiepileptic maybe limited by severe side-effectsof an individual drug, use of othermedication such as the anti-

CLINICAL PRACTICE


spasticity agent, Baclofen, as wellas the hazard of interactions be-tween multiple antiepileptic drugs.

The antiepileptic drug ofchoice may varydepending on severalfactors:� The seizure type or epileptic syn-

drome� Age and weight of the child� Benefit versus adverse effects:

choice is affected by side-effectprofile

� Cost factor� Availability� Frequency of dosing� Early institution of treatment as

seizures tend to recur

Long-term treatment isrecommended in childhoodepilepsies associated withCP/other neurologicaldisorders. An adequate dose ofthe appropriate drug isadministered, as consideredappropriate for the individualcase (See Box 1).

Role of surgeryThere is a resurgence of interest inthe role of surgery. Surgery is anoption for management ofintractable epilepsy, when aresectable epileptogenic focus isidentified on EEG recording anddetailed imaging. The patientsmost likely to benefit from thepartial resection are the patientswith hemiplegic CP, andlocalisation-related epilepsy.Corpus callosotomy may benefitchildren with severely disablingdrop attacks.

Other considerations inmanagementIt is not impossible to discontinue

Choice of antiepileptic drug

Phenobarbitone in neonates

Sodium Valproate usual first choice for a wide spectrum ofepilepsies.

Carbamazepine, Phenytoin for the partial seizures;(Phenytoin still scores due to low cost and once-a-day dosing).

ACTH, Vigabatrin in West syndrome / infantile spasms

Lamotrigine for myoclonic epilepsies, tonic and atonic seizures.

Gabapentin, Topiramate, Levetiracetam as second-line drugs inpartial epilesies

Ketogenic diet, a low carbohydrate, high protein diet is a rela-tively safe non-pharmacological measure, worth a try in epilepsyrefractory to multiple antiepileptic drugs.

anti-epileptic medication in childrenwith CP and epilepsy, althoughseizure control is difficult com-pared to children who have epilepsywithout CP. Antiepileptic treatmentwas discontinued in the study byDelgado12 after a seizure-free pe-riod of two years.Twenty-seven ofthe sixty-five patients had relapseof seizures—patients with spastichemiplegia had the highest relapserate (61.5%), while the group withspastic diplegia had the lowest re-lapse rate (14.5%). In the study byZeifirou from Greece, 75.3% wereseizure-free for more than threeyears, which is an encouragingoutcome. The gamut of epilepsyin our hospital ranges from the in-frequent, well-controlled seizures toinjury causing drop attacks. Thereare children with severe develop-mental delay, and myoclonic jerksthat appear with frustrating regu-larity despite the use of multipleantiepileptic drugs. On the otherhand, there are teenagers with onlymild mental retardaton, who havebeen seizure-free for years, givingexams through National Open

School; there is the little girl withspastic hemiplegia and reflex epi-lepsy, on a two-drug combination,who regularly wins races in spe-cial athletic events. So, there areenough examples of courage andvictory to serve as a silver liningto the problem of CP com-pounded by epilepsy.

ConclusionAlthough it can seem like a doublewhammy to the family andcaregivers struggling with the pri-mary diagnosis of CP, epilepsy isnot an untreatable condition, and,with a change in attitude, can ac-tually be perceived and managedas a challenge!

To quote Dr. Jan Brunstrom,founder of the Cerebral PalsyCentre at St. Louis Children’s Hos-pital, who has CP herself, “I tellthe kids, it’s not fair that youhave CP, but you also have twochoices: You can crawl into acorner until you die, or you canfight back.”

Box 1

CLINICAL PRACTICE


References1. Singhi P, Jagirdar S, Khandelwal N,

Malhi P. 'Epilepsy in children withcerebral palsy'. J Child Neurol.2003Mar; (3):174-9.

2. Aneja S , Ahuja B, Taluja V, Bhatia VK.'Epilepsy in children with cerebralpalsy'. Indian J Paediatr. 2001 Feb;68(2):111-5.

3. Ozturk A, Demirci F, Yavuz T, Yildiz S.'Antenatal and delivery risk factors andprevalence of cerebral palsy in Duzce(Turkey)'. Brain Dev. 2006 Jul 4;[Epub].

4. AlShehri MA, Eid WA. 'Risk factorsfor development of hypoxic-ischemicencephalopathy in Abha City—

southwestern Saudi Arabia'. Afr J MedSci. 2005 Sep; 34(3):207-12.

5. Malin Carlsson, Gudrun Hagberg andIngrid Olsson. 'Clinical and aetiologicalaspects of epilepsy in children withcerebral palsy'. Dev Med Child Neurol.(2003),45:371-376.

6. Zafeiriou DI, Kontopoulos EE,Tsikoulas I. 'Characteristics andprognosis of epilepsy in children withcerebral palsy'. J Child Neurol. 1999May; 14(5):289-94

7. Kulak W, Sobaniec W. 'Risk factors andprognosis of epilepsy in children withcerebral palsy in north-eastern Poland'.Brain Dev. 2003 Oct; 25 (7): 499-506.

8. Kwong KL, Wong SN, So KT. 'Epilepsyin children with cerebral palsy'. Pediatr

Neurol. 1998 Jul; 19 (1):31-69. Sheila J Wallace. 'Epilepsy in cerebral

palsy'. Dev Med Child Neurol. 2001,43:713-717.

10. Hadjipanayis A, Hadjichristodoulou C,Youroukos S. 'Epilepsy in patients withcerebral palsy'. Dev Med Child Neurol.1997 Oct:39(10):659-63.

11. Uvebrant P. 'Hemiplegic cerebral palsy.'Aetiology and outcome'. Acta PaediatrScand Suppl.1988; 345:1-100.

12. Delgado MR, Riela AR, Mills J, Pitt A,Browne R. 'Discontinuation ofantiepileptic drug treatment after twoseizure-free years in children withcerebral palsy'. Pediatrics.1996 Feb;97(2):192-7.

CLINICAL PRACTICE

Calling Young Researchers & Potential Authors!

(Post Graduates in Social Work, Child Development, Clinical Psychology,Special Education, Medical and Rehabilitation Sciences etc.)

Here is an opportunity to contribute to our research culture by distilling your dissertation

into a 2000-4000 word paper! An alternative may be to focus on/or highlight one aspect of

the research. It may take a few days to compress a whole dissertation into a succinct,

readable account, but believe us, the time invested pays off.

So young friends out there, all the best as you move from dissertation to publications.


CE

RE

BR

AL

PA

LSY

Age

wh

en s

een

Infa

ncy

Pre

-Sch

ool

Ch

ildh

oo

d/

Any

age

Co

nce

rn (

s)

�

His

tory

of A

nten

atal

/pe

rina

tal/n

eona

tal

prob

lem

s su

gges

tive

ofba

by a

t ris

k fo

r C

NS

insu

lts

�

Doc

umen

ted

CN

Sab

norm

ality

in

the

neon

atal

per

iod

(rad

iolo

gica

l, E

EG

, et

c.)

�

Del

ay o

r de

viat

ion

inne

urom

otor

dev

elop

-m

ent,

espe

cial

lypo

stur

e an

d m

ovem

ent

patte

rns,

ofte

n di

agno

s-tic

of

cere

bral

pal

sy.

�

Alte

red

mus

cle

func

tion

Clin

ical

exp

ress

ion

(var

iab

le o

ccu

rren

ce)

and

/focu

s o

f mo

nito

rin

g

�

Varia

tion

in t

one

�

Del

ayed

mile

ston

es,

e

spec

ially

mot

or�

Abn

orm

al n

ewbo

rn r

efle

xes

�

Asy

mm

entr

y�

Hyp

erre

flexi

a in

the

g

row

ing

infa

nt�

Fee

ding

pro

blem

s�

Prim

itive

ref

lexe

s

(pe

rsis

ting

byon

d)

�

Poo

r m

otor

co-

ordi

natio

n,po

stur

al i

nsta

bilit

y an

dab

norm

al m

ovem

ent

patt

erns

.�

Mot

or t

ask

mor

e di

fficu

lt;sl

ow,

wea

k m

ovem

ents

.

�

May

pre

sent

with

spa

stic

ity,

atax

ia,

dyki

nesi

a (a

thet

osis

,dy

ston

ia,

chor

eoat

heto

sis)

and

mix

ed p

atte

rns.

�

Ext

rem

ity in

volv

emen

t m

aybe

var

iabl

e (d

iple

gia,

hem

iple

gia,

qua

drip

legi

a)

�

Mus

cle

imba

lanc

e, l

eadi

ngto

def

orm

ities

/con

trac

ture

s,d

islo

catio

n.

Pre

vale

nce

All

(var

iabl

ede

gree

of

invo

lvem

ent)

All

(var

iabl

ep

rese

nta

tion

depe

ndin

g on

seve

rity)

All

(var

ying

com

bin

atio

ns

of e

xtre

mity

invo

lvem

ent)

Nea

rly 5

0%

Oth

er i

mp

ort

ant

asp

ects

of

Hea

lth

wat

ch o

r m

easu

res

for

hea

lth p

rom

otio

n

�

App

ropr

iate

gui

danc

e to

prom

ote

feed

ing

�

Gro

wth

mon

itorin

g(w

eigh

t, le

ngth

, he

ight

,he

ad c

ircum

fere

nce,

etc.

)

�

Im

mun

izat

ion

�

Ort

hopa

edic

eva

luat

ion

and

guid

ance

with

pre

-sc

hool

lea

rnin

g ac

tiviti

esat

hom

e/pl

ay s

choo

l�

Mai

ntai

ning

goo

d po

stur

enu

triti

onal

sta

tus

and

hygi

ene.

�

Exe

rcis

e/da

ily a

ctiv

ities

are

impo

rtan

t to

kee

pm

uscl

e to

ne a

nd p

ower

optim

al t

hrou

ghou

t lif

e,irr

espe

ctiv

e of

the

spe

cific

ther

apie

s, g

iven

ove

rdi

ffere

nt p

erio

ds o

f lif

e-in

tens

ive

ther

apy

for

prev

entio

n of

con

trac

ture

sin

chi

ldre

en w

ith s

ever

esp

astic

ity.

�

A c

hild

with

ort

hotic

assi

stiv

e ai

ds o

r de

vice

sre

quire

s ev

alua

tion

for

chan

ge w

ith a

ge (

due

tofr

eque

nt w

eigh

t/hei

ght

incr

em

en

ts).

Man

agem

ent

�

Ear

ly in

terv

entio

npr

ogra

ms

incl

udin

gin

fant

stim

ulat

ion

�

Dev

elop

men

tal

ther

apy

(ecl

ectic

appr

oach

inv

olvi

ngel

emen

ts o

f oc

cupa

-tio

nal

ther

apy,

phy

sio-

ther

apy

and

play

).

�

Phy

sica

l the

rapy

:m

uscl

e st

retc

hing

,po

sitio

ning

, m

uscl

est

imu

latio

n.

�

Med

ical

man

agem

ent

of s

past

icity

(va

lium

,B

aclo

fen,

Tiz

anid

iine)

�O

rtho

tic m

anag

emen

tin

add

ition

to

phys

ical

ther

apy.

O

rtho

paed

icsu

rger

y m

ay b

eco

rrec

tive

or a

djun

ctiv

e.

CA

RE

NID

HI H

EA

LT

HW

AT

CH

SE

RIE

S


Age

wh

en s

een

Any

Age

Ado

lesc

ence

Co

nce

rn (

s)

�

Ass

ocia

ted

dy

sfun

ctio

ns

Em

otio

nal

and

cop

ing

iss

ue

s

Clin

ical

exp

ress

ion

(var

iab

le o

ccu

rren

ce)

and

/focu

s o

f mo

nito

rin

g

Men

tal

Ret

ard

atio

n�

Def

icits

in a

dapt

ive

beha

viou

rco

ncur

rent

with

sub

-ave

rage

inte

llect

ual

func

tioni

ng.

Vis

ual

pro

ble

ms

�

Str

abis

mus

, vi

sual

fie

ld,

defe

cts,

am

blyo

pia,

etc

.

Hea

rin

g i

mp

airm

ent

(se

nso

rin

eu

ral)

Co

mm

un

icat

ion

dis

ord

ers

�

Spe

ech

(oro

mot

or f

unct

ion)

�

Lang

uage

(

cent

ral p

roce

ssin

g, e

tc.)

Ep

ilep

sy—

all

form

s of

sei

zure

s

Uri

nar

y Tr

act

Infe

ctio

ns

Adj

ustm

ent

prob

lem

,A

ggre

ssiv

e be

havi

our,

Dep

ress

ion/

apat

hy

Pre

vale

nce

30

–5

0%

> 50

%(c

om

mo

n)

5–

15

%

Co

mm

on

30

–4

0%

Co

mm

on

Co

mm

on

Oth

er i

mp

ort

ant

asp

ects

of

Hea

lthw

atch

or

mea

sure

s fo

rh

ealth

pro

mo

tion

�

Indi

vidu

aliz

ing

educ

atio

n ac

cord

ing

to c

hild

’s a

bilit

ies

is i

mpo

rtan

t.�

G

row

th

and

deve

lopo

men

tm

on

itori

ng

�

Stim

ulat

ion

and

enco

urag

emen

tto

be

regu

lar

with

eye

exe

rcis

evi

sual

aid

s

�

Enc

oura

gem

ent

and

coun

selli

ngm

ay b

e re

quire

d to

ove

rcom

e th

ein

itial

res

ista

nce

to a

udito

ry a

ids

�

Man

agem

ent

as p

er t

he d

egre

e to

whi

ch c

omm

unic

atio

n is

im

paire

d

�

May

be

com

bine

d w

ith a

ltern

ate

augm

enta

tive

com

mun

icat

ion

�

Soc

ial

supp

ort

at h

ome,

sch

ool

and

wor

kpla

ce

�

Som

e ch

ildre

n m

ay r

equi

resu

ppor

tive

man

agem

ent

(di

etar

y,ex

erci

ses,

etc

.) f

or b

owel

and

blad

der

dist

urba

nces

�

Cou

nsel

ling,

fam

ily s

uppo

rt,

leis

ure-

time

activ

ities

�

Nut

ritio

n an

d ex

erci

se�

P

revo

catio

nal

skill

dev

elop

men

t�

E

duca

tion

on A

dole

scen

t he

alth

incl

udin

g se

xual

ity

Man

agem

ent

�

Ass

essm

ent,

spec

ial

educ

atio

n

�O

phth

alm

olog

ic c

olla

bora

tion

—co

rrec

tive

mea

sure

s su

ch a

ssp

ecta

cles

for

ref

ract

ory

erro

rs,

exer

cise

s, l

ow v

isio

n ai

ds,

etc.

�A

udio

logi

c co

llabo

ratio

ns—

Hea

ring

test

s, a

udito

ry e

voke

dpo

tent

ials

hea

ring

aids

, co

chle

arim

plan

t et

c.

�S

peec

h th

erap

y co

llabo

ratio

n

�A

ntie

pile

ptic

dru

g th

erap

y is

the

mai

nsta

y of

man

agem

ent.

Med

i-ca

l su

rvei

llanc

e to

be

need

-bas

ed

�M

edic

al s

urve

illan

ce

�P

sych

osoc

ial

supp

ort

in m

any

area

s, r

ehab

ilita

tion,

phy

siat

ry


EARLY CARE/CARENIDHI HEALTH WATCH SERIES

Help for the school-going child with epilepsy

1. Information–Education-Communication

a) For the teacher(s)b) Support staff of the schoolc) Child’s entire class (other children)

The training/information on epilepsy and seizure management, in particular, can be basic to meetthe target group's learning needs. This is ideally organized by the parents with the help of thePrincipal and the school doctor, whenever possible.

2. Parents to ensure the following:

a) Make the following available to the teachers.

� Guidelines in place for the child’s medication, with dosages, time schedules and side-effects explained.*

� Information on 'what to do in the event of a seizure' and home/cellphone number at which parents can be reached.

b) If seizures are ongoing, request teacher to write in a notebook the times, duration andantecedent of seizure episodes.

c) Give child adequate time to complete missed assignments/tests due to seizure activity ormedical appointments.

d) Encourage child to meet friends socially outside school hours, giving friends thechance to see the child in the home environment and all the settings that the child iscomfortable in.

3. Teacher (s) should give attention to the following.

a) Seating the child away from furniture/furnishings that could cause injury.

b) Providing supervision during playtime, field visits, etc. (It is important not to place restrictionson the child’s activities unless instructed by the child’s doctor, even as a plan for supervisionis drawn up by the class teacher).

c) Meeting parents at regular intervals to draw up Individualized Education Plan, if the childhas associated developmental problems and special needs (Special Education Support)

* A sample information sheet is provided alongside. This may be freely photocopied, translated or adapted by

the parents/teachers for their use.


INFORMATION SHEET*

(FOR TEACHERS AND PERSONS CARING FOR CHILDREN WITH SEIZURE DISORDERS)

Name of the child:________________________________________________________________________

Class & Section:_________________________________________________________________________

Age: ___________________________________________________________________________________

Type of seizures: _________________________________________________________________________

Typical Seizure look like: __________________________________________________________________

________________________________________________________________________________________

Does child have any warning: ____________________________________________________________

Typical seizures lasts for: ____________________________________________________________

Frequency of seizures (approximate): _____________________________________________________

Date of last known seizure: ____________________________________________________________

How child acts after seizure ends: __________________________________________________________

Medicine taken by the child: ____________________________________________________________

Time it is taken and how to give it:____________________________________________________________

________________________________________________________________________________________

Anything the child is not allowed to do:_______________________________________________________

Where to contact parents during school hours________________________________________________________________Tel. # ___________________

Doctor’s Name________________________________________________________________Tel. # ___________________

Any other special information teacher(s) should know (include special needs of the child, general healthproblem, if any)

________________________________________________________________________________________________________________________

________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

________________________________________________________________________________________________________________________

List of teachers & other staff having this information

________________________________________________________________________________________________________________________

________________________________________________________________________________________________________________________

* May be photocopied as often as you like. How much of the form needs to be filled is up to the parents and the teachers.


CARENIDHI is a registered non-profit organization (exempted u/s 80 G of the IncomeTax Act,1961) devoted to the promotion of education and applied research in the field ofneuro-developmental disabilities. The organization was initiated in 1997.

WHO WE AREWe are people from different walks of life coming together to work for the diffusion ofuseful knowledge about developmental disabilities. By ensuring that people who live withand work with disabled persons have the know how, CARENIDHI attempts to bridge thegap between research and practice, knowledge and application.

VISION OF THE ORGANIZATIONWith a vision to integrate disability-related Health Initiatives into “community development”,CARENIDHI calls for the combined efforts of people with different disabilities, their families,health and rehabilitation professionals, organizations involved in the care of disabledchildren, and supportive services in the Education, Social and Health sectors.

MISSION OF THE ORGANIZATIONThe mission of the organization is to play a promotional role in the Community BasedRehabilitation (CBR) of children with different disabilities in India by empowering thecommunity with the necessary knowledge and skills required for their optimal care.

To foster education and research in the field of disability so as to provide a platformfor learning and improving the quality of life for children with different abilities.

FOCUS OF WORKReaching out to large numbers through training and educational programmes as wellas policy relevant health research essential for further advancement of work in thisarea is a high priority.

We hope to contribute to the early detection and early intervention for effectivemanagement of neurodevelopmental problems through our publications and otherprogrammes. The Childhood Disability Update is one such effort towards this end.

About

C A R E N I D H I


Childhood Disability Update Subscription Form

The Childhood Disability Update is in its fifth year of publication. We are grateful to our dedicated readerswhose encouragement and support have motivated us to explore different areas of disability while maintaininghigh standard of publishing. Our readership has grown over these years. Financial constraints now compel usto fix a nominal subscription fee to the journal. Please fill in the subscription form and mail it to us at theearliest.

Name...................................................................................................................................................................................................

Discipline/Field of work ..................................................................................................................................................................

Areas of special interest ................................................................................................................................................................

Address...............................................................................................................................................................................................

..............................................................................................................................................................................................................

City...................................................................................State...........................................................................................................

Phone.................................................... Fax..................................................... Mobile....................................................................

E-mail..................................................................................................................................................................................................

Annual subscription for Individuals Rs. 100/- Annual subscription for Institutions Rs. 250/-

Six years subscription for Institutions Rs. 1,200/-

Mail cheque or bank draft payable to: CARENIDHIMailing Address: V-15, Green Park Extension, New Delhi-110016, India

CARENIDHIappeals to you...

Advocate Participation to develop human potential

Promote Inclusion by developing abilities

Promote Abilities by meeting special needs

Promote Early Childhood healthcare as a stepping stone to

EDUCATION FOR ALL


PLEASE MAIL YOUR ENTRIES TO:

The CDU Essay Competition, 2007C/o CARENIDHI, V-15, Green Park Extension,New Delhi-110016, IndiaEmail: [email protected]

CARENIDHI'S"POWER OF FIVE CLUB"

Walk with us some of the way......The Power of Five Club has been formed with the aim ofdeveloping our corpus fund to sustain programmes that arenot supported by any of our major project grants.

We at CARENIDHI believe that "one tree can start aforest...one handclasp lifts a soul...one candle wipes outdarkness...and one step can make the difference." And so itis with the Power of Five.

In Mother Teresa's words, "We ourselves may feel that whatwe are doing is just a drop in the ocean, but the ocean wouldbe less because of that missing drop".

All you need to do to join this club is to donate any sum,which is a power of the number 5, by cash or by cheque. Itmay be just Rs. 5, Rs. 25 (5 x 5), Rs. 125 (5x5x5), Rs. 625(5x5x5x5), Rs. 3,125 (5x5x5x5x5), Rs. 15,625 (5x5x5x5x5x5)or even more... .

Our support systems and strengths lie in resource-sharingand people's participation...and that includes YOU!

For further information, you may contact: CARENIDHIV-15, Green Park Extension, New Delhi-110016, IndiaTel.: 26101878, 26167459 E-mail: [email protected]

Yes!I would like to contribute to the

Power of Five Club

Please find enclosed Rs...................................

in cash/by cheque (No.......................................

dated..................................drawn on...................

..................................................................................

..................................................................................)towards CARENIDHI'S corpus fund.(Crossed cheques may be made in favour of CARENIDHI*)

Name..................................................................................

Address.........................................................................

.................................................................................................

Phone..............................Fax...................................

Mobile....................................................................

E-mail....................................................................

Date Signature

*(exempted u/s 80G of Income Tax Act, 1961))

CDU ESSAY COMPETITION

Community-based rehabilitation perspectives on early

intervention for the severely handicapped child with

multiple impairments

Prize for the best entry: Rs. 2,000/-

Conditions:1. The maximum word limit for each entry is 2000 words.2. Entry must be submitted alongwith the following: a. A covering letter giving the participant's name, date of

birth, full mailing address, education and currentoccupation.

b. A signed statement declaring the article is original.3. The entries must reach us before April 1, 2007.


About Childhood Disability Update

Aims and Scope: Childhood Disability Update is a multidisciplinary journal whichseeks to encourage a better understanding of all aspects of disability in children. Forthe professionals in the field of Neurodevelopmental Sciences and Childhooddisability, it becomes necessary from time to time to ask the question “what do weknow and where do we go?” In this field requiring much interdisciplinary exchangeof information, the journal provides a forum for reporting significant developmentsand views pertaining to developmental disability as well as to facilitate a dialoguebetween the disciplines. The young health professionals looking for a source ofinformed comments and ideas for clinical and applied research in childhooddisability can find CDU a good vehicle for continuing Professional Education. Whilethe major emphasis is on articles related to concept clarification, methodology in theareas of service delivery, review of research issues related to rehabilitation inpractice, the contents will include a range of issues including social policy, educa-tional and vocational training, clinical commentaries, everyday practice aspects, etc.

Editorial Policy: At the core of the publication is the guiding principle that personsworking in the field of Developmental Paediatric Disability, irrespective of the area ofspecialisation, need to discuss and reflect on some learning issues related todisability, with a spirit of enquiry and empathy.

Articles sent to CDU will be published after they are edited to suit the format of thejournal, subject to their suitability after peer review.

The Editors reserve the right to make alterations in the text without altering thetechnical content.

Criteria for selection include:� importance to the practice of healthcare and rehabilitation in terms of practice in

everyday practice� contribution to better service provision by care-providing organisations� importance for preventive, health promotion and educational services� innovative approaches and research applications

Instructions to Contributors

Submission of manuscripts:1. All manuscripts must be submitted in duplicate, typed double-spaced. Papers should include the following

a) Title page with the title, author name(s), and a footnote of biographical dataabout the author(s). Include a notation in the footnote if work was supportedby a grant or other funding source or was adapted from a conferencepresentation.

b) Abstract of fewer than 150 words in case the article happens to be a Researchreport/Technical report. Original research/technical report articles should havea structural format that includes the following headings: Background/Purpose,Subjects, Methodology, Results, Conclusion and Discussion.

c) Text not exceeding 10 pages (A-4 size), including introduction.d) References numbered consecutively in the text and at the end of the manuscript

for all Technical reports and Review articles according to the style of IndexMedicus/Vancouver System. Name(s) and Initial(s) of Author(s), followed bytitle of the paper, year of publication, volume number, first and last pagenumbers in that order e.g. Twibles RL. Final Fieldwork placements ofAustralian Occupational Therapy students in CBR projects inIndia.ACTIONAID Disability News 1996; 7 (2): 68-72.

e) Recommended reading/further reading for other general articles must be in theHarvard system (Name, date) in the text with an alphabetical list at the end ofthe manuscript.

f) Tables, figures, photographs must be numbered consecutively and placed in thesame order as cited in the text, after the references. Provide one original andtwo copies of each illustration. Figures legends should be given at the end ofthe manuscript.

g) In the case of articles with multiple authorship, a covering letter must accom-pany the article, with signatures of all the contributing authors and stating therole of each individual author.

2. Manuscripts, Editorial Correspondence and books for review should be sent tothe Editor, Childhood Disability Update, C/o CARENIDHI, V-15, G.roundFloor, Green Park Extension, New Delhi-110016, India.

3. The CDU reserves the right to copyedit manuscripts accepted for publication inaccordance with its style and format. The accepted articles may also be publishedelsewhere if so desired, after acknowledging the source.

Editorial Advisory BoardChairmanRosenbaum, Peter L (Hamilton, Canada)

MembersAbidi, Javed (New Delhi, India)Ahmed, Maroussia (Hamilton, Canada)Balasundaram, Pramila (New Delhi, India)Balogh, Erzsebet (Budapest, Hungary)Bedi, Vandana (New Delhi, India)Butler, Charlene, (U.S.A.)G Shashikala (Nagpur, India)Kumar, Vandana (Manama, Bahrain)Menon, Bina (New Delhi, India)Mundkur, Nandini (Bangalore, India)Patankar, Manjula (Gwalior, India)Prasad, Bindu (New Delhi, India)Ramanujam, P.R. (New Delhi, India)Sarin, Kavita (New Delhi, India)Saxena, Shekhar (Geneva, Switzerland)Varghese, Mathew (New Delhi, India)

EditorsShankar, SudhaPurtej Singh, PradipKolli, Sunanda Reddy

Address for CorrespondenceEDITORV-15, Green Park Extn., New Delhi-16Tel.: 26101878 Telefax: 011-26167397e-mail: [email protected]

The views expressed in the journalare those of the authors and notnecessarily those of ChildhoodDisability Update/CARENIDHI.

Published and printed byDr Sunanda K, for CARENIDHI (Trust)from A-34, DGS Appartments, Plot No.6 Sector 22, Dwarka, New Delhi-110045

Designed by Mehra ImpressionsTel.: 011-25121587, 9810550069

Printed at Aramuc Academic Press Pvt.Ltd., Plot No. 30, Udyog Vihar, GreaterNoida, U.P.

The publishing of this issue has been madepossible with a grant fromAramuc Scientific Communication (P) LtdC4H-24, Janakpuri, New Delhi-110058, India

childhood disability update vol 5 issue 1 1carenidhi.org/cdu_publication.pdf · 2 childhood...

Documents