IACP Consensus Statement
Theme for the year 2010 – Demystifying Cerebral Palsy by action through Awareness & Advocacy
It was agreed upon to work at four socio ecological levels – 1. Child & family 2. Schools & Educational Community 3. Media 4. Administration with increasing impact factor from low to high respectively.
In the absence of adequate infrastructure for implementation and follow up with camp methodology, for the time being participants were requested to concentrate on local environmental barriers through awareness and advocacy efforts as follows. The camp methodology will be taken up in future initiatives after creation of necessary infrastructure.
Plan of Action
- Form local core groups to implement activities with local funding.
- Child & Family –
- Conduct painting, sports & other cultural activities and offer encouragement. Involve a local achiever as a role model& mentor to set an example to younger persons.
- Organize walks involving children & adults with cerebral palsy, parents, professionals and public.
- Informative exhibition & posters for information of parents.
- Panel discussions, Q & A sessions with experts.
- Schools – Both Main stream & Special Schools to be involved via workshops, training programs & round table discussions. To help in this effort IACP will provide a draft protocol on main streaming if requested.
- Media – Publication of articles in news papers, talks on radio & local TV. Support for an advertisement on National TV to be worked upon with help of brand ambassadors.
- Administration – Interact with local disability commissioner and Dept of empowerment & social justice both at local, state & central govt.levels with the help of institutions like NIOH, NIMH, NIMHANS, AYJNIHH, NCERT, &National Trust & NGO’s like Spastic Societies, Lion Clubs, Rotary clubs, Parivar & Parents’ self help groups as well as all related specialty academic bodies & IMA.
- Participating delegates of the meeting were requested to implement as many of the above programs as locally feasible and send reports to General Secretary IACP before 31st October for publication in the Nov News Letter & IACP web site.
- It was also agreed upon to learn from the experience of first year to improve the guide lines for future initiatives.
PREESS RELEASE ON - National Cerebral Palsy Day Celebrations.
Cerebral palsy is the most common childhood impairment affecting approximately 3/1000 live births in our country. It is a neuro developmental disorder which means a condition resulting from interference to the development of the brain during early months of pregnancy, during birth or soon afterbirth or early childhood due to impaired blood supply, decreased oxygen, glucose or calcium supply, infections, trauma & preterm birth. An extremely small % of cases are due to genetic causes as also stress [both physical and mental]. Research has proved that most cases are due to multiple causes operating together to bring about a cascade of events that result in brain cell death during rapid & vulnerable phase of development from 5th month of pregnancy to the first two years of life.
Since it is a brain disorder, it affects all aspects of brain functions. Although it predominantly affects mobility, it can impair vision, speech, sensation, bladder control, hearing, learning & behavior. Some of the children may additionally have fits. Due to abnormal biomechanics, they may also develop progressive muscle and bone lesions in spite of the initial brain lesion not increasing. As it is a developmental impairment which causes functional limitations and not a disease, there are no curative solutions in the traditional health model of disease and cure but early diagnosis & interventions by multi or trans disciplinary professionals from fields of medicine, therapy, psychology, special education, assistive technology & psychosocial sciences, can lessen their limitations & improve the quality of life of persons with cerebral palsy and their families. They need a system of health care across lifespan. All modalities of treatment depend on the ability of brain cells to increase their connectivity if environments are enriched and result in optimal compensation in the early years of life when brain growth is maximal and concentrate on decreasing limitations in the later years. They also need inclusive policies at all levels of governmental & societal action in all spheres of life.
50-60% of children with cerebral palsy have normal intelligence and can be educated in normal schools and pursue wide range of careers like any other person in spite of their mobility limitations and become contributory members of society. But this is only possible if the societal discrimination, disparities and attitudinal barriers are minimized. Center of disease control of USA has calculated the life time cost of cerebral palsy to be nearly one million USD in USA. To the utter surprise of medical fraternity, they found the social costs of cerebral palsy much bigger than the medical costs which means we need to do much more for these persons at a societal & administrative levels. Social costs refer to the caring, housing, education, employment and recreational expenses. Hence, lot more research initiatives world over are being done to prevent cerebral palsy at primary level as well as reduce the consequences at secondary level and improve quality of life at tertiary levels so that economic impact of disability can be minimized. Money spent on preventing cerebral palsy & its consequences due to negligence is money saved for the cumulative benefits of the society at large.
Realizing the importance of such efforts and their glaring paucity across the country, professionals from various medical & related rehabilitation fields have formed “The Indian Academy of Cerebral Palsy” in December 2005 and are working together to improve academic as well as service expertise of its members. To improve community awareness & to facilitate social advocacy, IACP has decided to celebrate October 3rd from this year onwards as “National Cerebral Palsy Day” in honor of their 1st founder president late Dr. Perin .K. Mullaferoze who pioneered multidisciplinary care of cerebral palsy in the country. The purpose of such a nationwide program is to demystify cerebral palsy riddle to the public at large and minimize the effects of rampant myths prevailing in the society. Eradicating ignorance & misconceptions is a powerful tool in public health domain and will ensure the growth of an inclusive society where every individual, irrespective of abilities and developmental differences, earns his or her rightful place under sunshine and lives a life of dignity and not be looked upon as a social liability.
Society needs to inculcate attitudes of empathy & understanding in creating level playing field for these persons and their families and not dole out lip sympathy and charity. The members of IACP solicit your cooperation in this endeavor by joining National Cerebral Palsy Day Celebrations. Come and join us in our Walk on 3rd morning or watch the endearing cultural performances show casing their talents or learn about cerebral palsy through our poster exhibition or read the articles in newspapers or listen to our talks on radio. Support us in minimizing architectural and attitudinal barriers. Let us reach out to them as a wholesome society together. To know more about us, please log on to www. iacp.co.in
All of you can ask Mr. Mallikarjun for IACP logo & letter pads which will be sent to you immediately.
Wishing all of you bountiful success in your celebrations,