Cerebral Palsy and Where to get help on CP in India!

What is Cerebral Palsy?

Cerebral Palsy is a life-long physical disorder that affects people in many different ways. It covers a group of disorders affecting a child’s body movement, ability to control their muscles, coordination, reflexes, posture, balance and sometimes ability to communicate.

Cerebral palsy can be so severe that walking is difficult, or it can be so mild that it is unnoticeable to most people. Some children with cerebral palsy might have epilepsy, hearing, learning and visual difficulties and intellectual impairments. Cerebral palsy can’t be cured, but the problems it causes can be.

In India, around 3 in 1000 babies are born with Cerebral palsy.

How does one come to know if the child has CP?

There is no single test to diagnose cerebral palsy. It can’t be detected during pregnancy, but proper medical care during pregnancy and birth can help to reduce the risk. Babies with CP might have muscle stiffness and spasms, or they might have low muscle tone so that they feel ‘floppy’ when picked up.

The condition is often picked up when a baby or toddler doesn’t meet the expected developmental milestones for their age. So signs in babies to look out include:

-inability to hold up their heads at the right stage

-inability to sit up or rollover at the right stage

-difficulty feeding or swallowing

-using one side of their body in preference to the other

-Toddlers with cerebral palsy may not reach typical milestones such as walking by 18 months and speaking simple sentences by three years of age.

What are the causes of CEREBRAL PALSY during pregnancy?

• Maternal infections

Maternal infection is an infection acquired by the mother who then transmits the infection to the fetus. This transmission can occur via the placenta before delivery or via the birth canal during labor and delivery when the baby is exposed to maternal blood.

So it is very important to be away from infectious diseases and maintain hygiene during pregnancy. Any illness should be immediately reported to a doctor for timely treatment.

• Genetic Mutations

Cerebral Palsy is not a hereditary condition, but certain abnormal changes in the structure of genes can cause Cerebral Palsy. Risk factor of these abnormal genetic changes increases in marriages of close relatives.

• Fetal Hypoxia

Fetal hypoxia occurs when the fetus is deprived of an adequate supply of oxygen. It may be due to a variety of reasons such as cigarette smoke if either mother herself smokes during the pregnancy or is exposed to secondhand smoke. It can also be caused by various physical conditions like obstruction of air passage due to tangling of umbilical cord or direct injury to the fetus.

What are the possible treatment options for Cerebral Palsy?

1) Physiotherapy

2) Speech therapy, which can help with speech, eating and drinking difficulties

3) Management of hearing and vision impairment

4) Occupational therapy

5) Behavioural therapy or counselling

6) Special education

7) Medication

8) Surgery

How to get help with regards to Cerebral Palsy in India?

1.KOLKATA:

NGO:

Indian Institute of cerebral palsy-Kolkata- http://www.iicpindia.org/

+033 2401 3488/0240

2.MUMBAI:

NGO:

a.Cerebral Palsy Association of india-mumbai
  http://www.cpai.org.in/

098708 43937

b.POSAT Foundation
  www.posatfoundation.in

022 28956933

c. SAARTHI -School For Special Children

http://ridafoundation.org/current_project.html
Telephone Exchange Andheri - Kurla Road, behind SakiNaka, Saki Naka, Mumbai, Maharashtra 400072

HOSPITAL:

Kokilaben Hospital- Mumbai

https://www.kokilabenhospital.com/departments/clinicsatkh/cerebralpalsyclinic.html

3.BENGALURU:

NGO:

SAMA Foundation-Bengaluru

https://www.sama-foundation.org/

080 2314 6507

4.DELHI

NGO:Udaan-Delhi

https://udaan.org/

+91-11-26446978

5.CHENNAI

HOSPITAL:

Dr. Mehta's hospital- Chennai

https://mehtahospital.com/pediatrics/index.php/doctor/dr-k-nedunchelian/

+91-44-4227 1001 - 1005

Transpact is proudly associated with POSAT  and  SAARTHI -School For Special Children in Mumbai.

SAARTHI School for Special Children run by an NGO- Rida Foundation has been associated with Transpact Enterprises in the areas of Research and Product Development since 2013. The School provides integrated care comprising of academic, vocational, medical, and psychological support to the Special children of all sections of society, irrespective of financial considerations.

POSAT Foundation is a charitable organization working for the upliftment of physically and mentally challenged children and adults. The trust runs a rehab. center in Borivali West and special classes for challenged children in Rustomjee International School in Dahisar west and Balbharti School Kandivali West. The Rehab. Centre caters to the therapeutic management to the children suffering from cerebral palsy, mental retardation due to any cause including genetic conditions like Down syndrome, Autism Spectrum Disorder, ADHD and Learning Disability.

You can donate/ seek help from SAARTHI and  POSAT by dialing 097680 18786 and  022 28956933 respectively.

"Laws Protecting & Defending the Rights of the Special Need Population"

The Core Value of human rights mission underpins a system of basic freedoms that affords protection against the abuse of power and creates space for the development of the human spirit. Four Values- Dignity, Autonomy, Equality and Solidarity are of particular importance, both in general terms and in the context of Disability. Over 600 million people or approximately 10℅ of the world’s population have disabilities of one or other form. Over the last 2 decades, a drastic shift took place from an approach motivated by charity towards the disabled to one based on rights. The human rights perspective on disability means viewing people with disability as a subject and not as an object. It involves moving away from viewing people with disability as a problem towards viewing them as holders of rights. People with disabilities must be afforded freedom but also the means to take advantage of it. This can be done by providing relevant social support and in particular by respecting economics, social and cultural rights. The main human rights challenge is accommodating the difference of disability and making people with a disability visible within the system. 

Protection against Exploitation and Discrimination 

Disabled persons shall be protected against all exploitation, all regulations and all treatment of a discriminatory, abusive or degrading nature. 

Disabled persons shall be able to avail themselves of qualified legal aid that proves indispensable for the protection of their person and property. 

If judicial proceedings are instituted against them, the legal procedure applied shall take their physical and mental condition into account. 

Disabled persons, their families and communities shall be fully informed, by all appropriate means, of the rights contained in this Declaration. 

Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 

Of late, the Government of India has enacted a comprehensive piece of legislation namely. "the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995" to enforce the human rights of the disabled in pursuance of the UN Declaration. This law is an important landmark and will ensure equal opportunities for persons with disabilities and their full participation in the nation-building. The Act provides for both preventive and promotional aspects of rehabilitation like education, employment and vocational training, reservation, research-creation of barrier-free environment, rehabilitation for persons with a disability, unemployment allowance for the disabled, special insurance scheme for the employees and establishment of homes for persons with severe disability, etc. The Act has been enforced w.e.f. 07.02. 1996. All the state governments have been requested to take necessary steps for speedy implementation of the provisions of the Act. 

National Handicapped Finance and Development Corporation 

The Government has also set up a National Handicapped Finance and Development Corporation with an authorised share capital of Rs. 400 crores and paid-up share capital of Rs. 200 crores to make persons with disabilities productive and bring them into the mainstream of economic activity. 

National Human Rights Commission 

India being the signatories to the Human Rights Charter of the United Nations, constituted a high powered Commission namely, National Human Rights Commission to protect not only human rights of citizens but also of all categories of disabled persons. The Commission also deals with the violation of human rights as well as protection against exploitation, discrimination etc. 

In the absence of a proper forum to take up the cases on behalf of disabled persons before the National Human Rights Commission, the disabled have not so far taken any advantage from the Commission. Hence there is an urgent need that some organized groups of people should come forward to help the disabled in taking up their cases pertaining to violation of rights and exploitation and discrimination against them. 

The following measures for creating awareness and removing ignorance are suggested: 

(a) It is desirable that students from primary level should be introduced with the subject of the disability to enable them to develop better understanding towards the disablement over a period of time. Obviously, proper awareness and understanding is absolutely necessary to treat them on equal footing or at par with normal human beings and offer them the opportunities to unfold their capabilities without any exploitation and discrimination. 

(b) The Ministry of Social Justice and Empowerment should take up the matter with the Ministry of HRD; University Grant Commission (UGC) and All India Council of Technical Education (AICTE) regarding introduction of the subject on disability in all academic and professional courses in the country. This will also generate goodwill for the disablement, besides development of better understanding. 

(c) The NGOs can also play a vital role in removing ignorance and creating awareness about the rights of the disabled through constant efforts and programmes. 

(d) Mass media, like newspapers, radio, TV and films may also be helpful in dispelling the prejudices and discriminations against the education, placement and rehabilitation of the disabled by depicting success stories of the people with disabilities. 

Hence, this laws and rights help the Special Need Population of people with intellectual disabilities to live a meaningful, satisfying & productive life in our community. 

AN INSPIRING STORY ON WORLD DISABILITY DAY

International Day of People with Disabilities i.e. 3rd December is considered as an international observance day promoted by the United Nations since the year 1992. This day especially aims for promoting an understanding of disability issues or problems and to mobilize support for the moment of dignity, the well-being of people and the rights of the people with disabilities. This day also looks forward to increasing the awareness of the gins to be derived from the integration of persons with their disabilities in every aspect of cultural, political, economic and social life.

As we talk about Disability and dreams, here's a question for all. Can you imagine someone whose legs have been affected by polio and cannot walk participating in a sport like a powerlifting at an international platform that requires extreme power and physical strength? Mr. Rajinder Singh Rahelu is the answer to this question.

Mr. Rahelu is an Indian Paralymic Powerlifter suffering from "Infantile Paralysis". Since his infancy he has not been able to walk. But he did not let his disability come in between him and his dreams. He continued to practice and today, he has created a history of his own by winning a silver medal in powerlifting at the Common Wealth Games 2014. He initially started by lifting a weight of 75kgs but his rigorous training and motivation made him enough to actually lift a weight of 115kgs in a period of 6 months. After grabbing his 1st medal in the field of powerlifting in 1997 at Punjab Open Meet, he never looked back. In the next consecutive year, he won National Powerlifting Championship which gave a great push to his career and life and his achievements have never stopped after that.

He never let his disability stop him, he kept on overcoming the life challenges with his immense dedication and devotion. Today he is a successful coach at Government of Punjab's Sports Department. He is also training the specially-abled powerlifters.

It is the disability heroes like Rahelu that keep us inspired during our lowest days in life. On this Disability Day, we can see him as an inspiration to the 180 million specially-abled Indians to overcome the impact of their disability on their lives!!!