Her parents’ eagerness to give something back to Saudi Arabia sparked Maha Al-Juffali’s passion to develop a dedicated center for children with mental disabilities. Together with two of her friends, who are professional therapists, Al-Juffali started very small 25 years ago in a unit in the Juffali residential compound. “In those days, Saudi families had to either keep their disabled children at home or send them to boarding schools in Lebanon, Jordan or Egypt,” said Al-Juffali, director and supervising trustee of the Help Center.
“My parents encouraged me to start and develop a pilot project to provide services to children with mental disabilities: the Help Center. We three started very small and grew by learning from our mistakes.”
As a certified Child Life therapist who studied child psychology, Al-Juffali founded the Help Center in November 1985 as a guidance and counseling center. The biggest challenge for her then was information. “We had to rely on our own knowledge because when we addressed the concerned government offices, there were no statistics, no guidelines — nothing to base our work on in the Kingdom. The two volunteer therapists and I had to literally knock on school doors and hospitals and try to get information about children who were having difficulties or who had been born with disabilities,” said Al-Juffali.
At first, people were wary and had no information on how to deal and bring up their challenged children. “Hence they were skeptical of us.” However, sooner than Al-Juffali could ever have imagined, people started bringing their children to the Help Center.
“We have come a long way... Today, these same parents know how to depend on themselves and enjoy their children. They know how to integrate the child into their lives as well as knit the family. They have a sense of belonging and feel a sense of support. They also take their children out instead of keeping them at home,” added Al-Juffali.
Twenty-five years ago, special education did not exist as a subject in the Kingdom’s universities. That created a challenge for Al-Juffali to recruit professionals for the Help Center so she had to rely on non-Saudis. “Our major challenge then was how to educate our faculty because the entire program is taught in Arabic, so we could not rely on non-Arabic speaking colleagues. Slowly, our Arabic speaking faculty and colleagues increased to replace foreigners. We have many young Saudis — both men and women — who are keen to learn and work,” said Al-Juffali.
At present, with many studying special education in Saudi universities, the Help Center has 156 employees from different nationalities. Despite the multi-ethnic nature of the center, it has met and exceeded the Saudization quota instigated and demanded by the government — and it was awarded the Kingdom’s Award for Saudization in April 2008.
“Over the years, we have had many volunteers, especially for our activities and events. These are mostly foreign women married to Arab men or students who want to do community service before going off to college and university,” said Al-Juffali.
Since its establishment, the Help Center has provided a range of services for more than 5,000 families — counseling services, outside services, support services or any other service for children with mental disabilities and their families. The center has the capacity to provide services to approximately 100 infants aged between birth and three years and approximately 250 children from ages 3 to 18. “The number of children in the Help Center over the course of 25 years has gone from one child to 350,” said Al-Juffali.
In an attempt to expand the services and facilities of the Help Center, Al-Juffali’s mother established “Dirat Ajdadi” — the first sports and leisure club in the Middle East for adults with mental disabilities. “In January 2007, my mother donated the house where my brothers and I grew up and established Dirat Ajdadi. The club is mainly for Help Center alumni. We have approximately 70 graduates so far but not all of them go to Dirat Ajdadi,” said Al-Juffali.
Even though there are close to 30 centers in Jeddah dedicated to children with special needs, the Help Center is the only one that caters to those up to the age of 18. “Most centers stop at the ages of 12 or 15. The period from 12 to 18 years is crucial in the lives of all teenagers. All the major changes occur during these years and the parents can’t handle these alone,” explained Al-Juffali. “Owners and management teams of all specialized centers should realize the vital role they could play to alleviate the stress and difficulties in the lives of these families,” she added.
Another major issue that Al-Juffali is concerned about is the caliber of faculty members, services and programs in comparison to the fees that are demanded by the centers. She believes that centers specialized to help people with disabilities are not, and could never be, businesses.
“We provide services in hopes of alleviating pressure on the families to create a healthy environment. We advocate their rights and society’s duties toward them and recognition of equal opportunities,” said Al-Juffali.
On this basis, the center caters to all levels of society. Al-Juffali explained that they are a nonprofit, philanthropic establishment and have a sliding payment scale which ranges from SR150 per year to a maximum of SR16,000. “We apply the ‘Robin Hood’ concept. Our social services department undertakes a study of the family and each family pays what it can afford. The amount is channeled into an account we call “the children’s account” that covers expenses related to medical equipment, surgeries, medication, transportation, etc.,” said Al-Juffali. “We have never refused a child if the family cannot afford an annual contribution. The amount set for each family is based on a study of the family in order to ensure that the payment is not a burden,” she added.
To push concerned government entities as well as the private sector to respond to the needs of people with special needs, the Help Center held three major events. First, in January 1997, the it hosted a seminar on “Early Intervention” and another seminar in November 1998 on “Practical Approaches to Understanding Your Child’s Behavior.” In 2001, the center hosted its third major event - a symposium on “Integrating and Employing Persons with Special Needs in the Society.”
As a direct result of the seminars, many specialized centers were established. One of the major governmental hospitals established an Early Intervention Unit within the hospital, with the assistance of Help Center specialists. “I was a member of the task force that drafted the by-laws for the employment of people with disabilities in Saudi Arabia, by-laws to regulate the employment of persons with special needs, i.e. working hours, benefits, etc,” said Al-Juffali.
Additionally, a law was passed directing that 5 percent of the total work force of any corporate establishment should be those with disabilities. And in line with Saudization, another reinforcing law was passed that every Saudi with a disability employed by a corporate establishment equals the employment of four able Saudi nationals.
The Help Center has been a pioneer in employing people with disabilities. During the last two years, the center has offered a vocational orientation program to both male and female students aged 16 to 18 - “to help place those who can work in suitable working environments.” Not all of the graduates are capable of employment. Despite Al-Juffali’s determination and countless efforts in taking care of people with special needs, she feels there is still much to be done.
“Even though society is becoming more and more aware of issues related to disabilities, we still need to send out developmental messages. We need to trigger thought on specific matters and promote the advancements of people with disabilities in society,” said Al-Juffali.
When Arab News asked Al-Juffali about her ambitions for the Help Center, she said she would love to develop a mobile clinic program that would allow them to expand their services to more remote areas. “We currently service Jeddah and its outskirts. We also have a few children who come from Makkah. We even had a couple of children from Madinah... Unfortunately, they cannot benefit from the program unless they attend every day,” she said. “I want to continue to provide the best services we can to as many families as we can.”
