Giving them a voice to achieve their goals

Sia (with white headscarf) talking to some of the young adults with disabilities at the Beautiful Gate Foundation for the Disabled. — Photos: ART CHEN and AZLINA ABDULLAH/The Star

KENNY Lee Man Njun, 21, who is pursuing a diploma in Mass Communication, is also an author of a motivational book and will start working from home soon.

He is jovial with big dreams but suffers from Duchenne Muscular Dystrophy, and this sets him apart from the rest.

Lee can only move his head and right hand, partially.

But with help from Beautiful Gate Foundation For The Disabled, a non-profit independent living centre (ILC) for the disabled, Lee is able to live independently.

At ILTC in Rawang, visitors are taught work skills such as how to use a computer.

“Every day, a caretaker lifts me up from my bed and helps me with my daily tasks. Without a caretaker, I will be lying on the bed all day and will be unable to go to the toilet.

“I rely on my electric wheelchair to move and I am blessed with the support from ILC. With a conducive environment and help from my caretaker I am more productive. I am looking forward to working from home in the e-commerce sector soon,” said Lee, who wished for more such centres that would allow others like him to tap their fullest potential.

His long-term goal is to become a motivational speaker like Nick Vujicic, who has a rare disorder and was born without arms and legs.

Just like Lee, adults with disabilities aspire to be able to live independently, participate and contribute to society.

The ILTC in Rawang has so far benefitted 200 disabled individuals.

Given the option, most are not keen to depend on their family members or caretakers to exercise their life choices or decide on their future.

In the 11th Malaysia Plan, the Government announced that seven ILC would be set up in the country to improve the quality of life for the disabled.

Based on a report by StarMetro in September, the Social Welfare Department said the centres would be available by 2020.

According to reports by the Social Welfare Department (JKM), statistics show that there are 24,193 severely disabled persons in Malaysia.

Understanding the pressing needs of the disabled, two non-profit groups have been operating ILCs, tailored to the disabled’s needs in the country, in Petaling Jaya and Rawang in Selangor since early 2000.

We spoke to the founders and occupants of Beautiful Gate Foundation in Petaling Jaya and Independent Living and Training Centre Malaysia in Rawang on the benefits of ILC and the positive role it plays in helping adults with disabilities.

A place the disabled call home

Beautiful Gate Foundation founder Sia Siew Chin said the independent living concept was introduced here in 2005.

Sia was among the disabled selected by the Social Welfare Department, Japan International Cooperation Agency and Human Care Association to learn about the independent living concept in Japan in early 2000.

The disabled here get transportation and job placement at the Beautiful Gate Foundation.

Upon her return, she introduced the concept of independent living at the foundation’s centre.

“Medically, someone like Lee may not be able to recover and walk. However with an accessible environment, a caretaker and suitable transportation he could go almost anywhere and live a more productive and meaningful life.

“Without necessary help he would be just lying in bed at a shelter, with almost no interaction with the outside world,” said Sia.

Aside from coping with his disability, Lee had faced other tribulations -- his mother passed away, his dad suffers from colon cancer and his sister has a heart-related illness and lives in a shelter home, said Sia.

“He came to our independent living centre in 2009 filled with anger and low-self esteem. Over the years, he has transformed to become jovial and is now pursuing his tertiary education.

“Just like him, many others with disabilities will benefit from a well-managed ILC,” she added.

The centre provides peer counselling as well as independent living programmes that teach the disabled to care for themselves, personal grooming and goal setting.

Hee (left) has been selling MBPJ parking coupons in SS2 while San makes handicrafts.

Other services such as health medical management, consultation, financial management lessons and advocacy are provided. The disabled are assisted with transportation and job placement too.

“We are not a welfare home. Here, we empower the disabled to become independent and give them a voice.

“We listen and help them to achieve their goals. Often, their family decides for them and they are left feeling frustrated and useless,” Sia noted.

The centre has several other adults with disabilities who have achieved small yet meaningful milestones, such as Hee Sin Chee, 24, has cerebral palsy and wants to support herself financially.

“I want to earn money and take care of myself,” said Hee, who also has speech difficulties.

Sia said when Hee first enrolled at the centre, she could not hold a conversation. Now, she sells council parking coupon outside a school in SS2, Petaling Jaya.

“Hee was excited when she sold 30 parking coupons on her first day at work. She phoned me and expressed her happiness. We are proud of her achievement,” said Sia.

San Lee Huan, 40, also has cerebral palsy and is unable to speak. She was sent to the centre seven years ago and has since learnt to make handicrafts. She was also taught some simple Chinese sign language.

Sia said San should be respected as an adult despite having limited physical mobility and speech problems.

Mohd Amiruddin S. Abdul Rahman, who has mobility issues, makes use of the facilities at the centre in Rawang.

“We must respect her feelings, her thoughts and give her time to express herself. It takes a lot of time and patience to sit beside her and guess what she is saying but we do not disregard her. She looks much happier now and has friends here,” said Sia.

Teo Vik Sean, 25, was diagnosed with brain cancer when he was 17. After several surgeries, his memory was affected.

He came to the centre to learn to live independently because he felt his life decisions were controlled by his parents.

“My parents will not allow me to even wash the cups. This is not how I want to live my life. I am happier here because I am respected as an adult and I am taught to take care of myself,” said Teo, who wants to work and be financially independent.

Beautiful Gate Foundation For The Disabled has branches in SS2 Petaling Jaya (Selangor), Kepong (Kuala Lumpur), Kampar (Perak), Seremban (Negri Sembilan) , Batu Berendam (Melaka) and Klang (Selangor). For details, call 03-7873 6579, 603-78758609 or email info@beautifulgate.org.my

Independent Living and Training Centre Malaysia

Husband and wife pair, G. Francis Siva and Gurdip Kaur, became disabled in their adulthood. Francis was in a road accident and Gurdip suffered from a fall when she was five months pregnant.

The accidents led them to physical disabilities but kindled their spirit to make life better for others just like them.

In 2002, both were selected to present a paper on “Independent Living Concept Movement in Malaysia” in Japan by Disabled People’s International.

“Prior to our visit to Japan, we only knew of ILCs through the Internet.The visit was an eye-opening experience for us.

“We saw others in worse condition than us, who were bedridden but still they were able to attend conferences.

“They had helpers to assist them.

“We were impressed by the respect and opportunity provided to the disabled there,” said Francis.

Gurdip said that based on her experience, doctors in Malaysia tended to impose their medically-driven decision on how the disabled should live their lives. She said that might not be the most ideal solution.

“Instead, the disabled must be given the option to decide for themselves,” she said.

Gurdip (in wheelchair) teaching a visitor how to cook.

Upon their return from the conference in Japan, the couple tweaked their concept of Independent Living and Training Centre Malaysia that was established in 2000.

The centre has so far benefitted 200 disabled folk.

Francis said the centre offered training in living and work skills such as computer knowledge and language proficiency, physical training and even leadership training.

He said the trainees would be provided with counselling, personal motivation, information on services related to disability, familiarisation with vehicle driving, self-development programmes, social and sports activities. The disabled residents will also be assisted in job placement based on their preference.

“Many who come to us are depressed. We help them address their worries so that they can shift their focus to their future undertakings,” said Francis, who welcomed the Government’s idea to set up ILCs here.

He said the Government should engage with the private sector when setting up such centres.

“We can give our input so that it can help more people,” he said.

Francis showing the new wing of the dorm at the ILTC in Rawang.

P. Palaniyandi, 39, is disabled following an accident. With the help of Independent Living and Training Centre Malaysia he has regained confidence and is now a foreman in a car workshop.

“I am dependent on my wheelchair to move, but I am able to drive a modified car. I still come to the centre to use their facilities such as the gym,” said Palaniyandi, who drove from Tangkak, Johor, to the centre in Rawang. He also learned cooking at the centre.

S. Sarkunan, 40, became disabled in a motorcycle accident when he was 24 and was laid off his job in the banking sector. After coming to the ILC, he has regained confidence and wants to set up a business.

“I came to the centre feeling extremely down, but now I have a dream to open my own prepaid top-up booth,” said Sarkunan.

For details on Independent Living and Training Centre Malaysia, call 03-6091 2531 or visit http://iltcmalaysia.blogspot.my

Read more at http://www.thestar.com.my/metro/metro-news/2017/10/26/giving-them-a-voice-to-achieve-their-goals-independent-living-centres-provide-a-conducive-environmen/#rUyXQ3WY32z4mU6G.99