Circa 2012
Recently ABILITY’s Chet Cooper traveled to New York City and met up with Saudi Arabian Princess Sameera Bint Abdullah Al Faisel Al Farhan AlSaoud. She is the chairperson for both the Saudi Schizophrenia Charity Association and the Charitable Society of Autism Families. On the homefront, she’s the mother of four, including one child with schizophrenia and another with autism. Cooper and the princess were joined by her interpreter, Abdulmohsen Al-Otaibi, PhD, who served as the director of her autism organization for three years, and is a social philosophy professor of education at King Saud University. He completed his PhD at Michigan State.
Cooper: What is Saudi Arabia doing to address autism?
Princess Sameera Bint Abdullah Al Faisel Al Farhan AlSaoud: There is now a law and a system to govern the care of those with autism in Saudi Arabia. We’ve established a center for autism in Riyadh, and I’m a member of the Saudi Autistic Society. I invite families every month to my house to talk, and we’ve also established the Charitable Society of Autism Families. I want to distribute information to all the universities and hospitals to increase awareness. I also have a child with autism, and I show people his picture so they understand my situation and don’t feel a need to hide if they have a child with a disability.
Cooper: How old is your son?
Princess Sameera: He’s 21.
Cooper: How old was he in the picture?
Princess Sameera: Which one? We have a lot of pictures, some before the diagnosis and some after.
Cooper: Is there a difference between the two sets of pictures?
Princess Sameera: Yes, there is a big difference. Earlier on, he could concentrate, and then later he began to turn his face and not make eye contact and he was not as social.
Cooper: After he was diagnosed, did you seek treatment for him?
Princess Sameera: Yes. I checked out many places, five states in the US and other facilities in Germany, Morocco and Britain among them. Finally, I brought him to Los Angeles.
Cooper: Wait, you didn’t call me when you were in LA?
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Princess Sameera: This was a long time ago, maybe before you were born. (laughs) So anyway, he stayed in LA about six months and was admitted to a program for autistic individuals. When I brought him back to Saudi Arabia, I got him enrolled in another program with four other typically able kids, and after a year of this mainstreaming experiment, I placed him with kids in a regular school and it was successful.
Cooper: With visiting different facilities around the world, did you see what seemed to be working and what didn’t?
Princess Sameera: I think there are three very important points to consider.
Cooper: We only want two. Princess Sameera: (laughs) One is family. Any center that works with autistic children should consider their family first. The second point has to do with training the autistic child to communicate with others. The third point is to get students to learn academically, socially and psychologically.
The best program I saw was at UCLA, where they set the standard for research and treatment models for autism, while optimizing treatment for individuals with autism.
Cooper: When your son was in the LA program, did you notice a significant change in him after six months?
Princess Sameera: Yes. He had acquired different skills. They complemented training he had received with other kids in a Saudi Arabian program, which was successful, as well. The Charitable Society for Autism Families in Saudi Arabia is another resource; each month there are two meetings for families.
Cooper: That organization started out with meetings in your home; do you still host those?
Princess Sameera: Just for the volunteers and people who work with me in the evenings. After sunset, we write letters to government officials and review newspaper articles written about autism in the mass media. Some people come around 7 and stay past midnight, and I have to tell them to go home.
Cooper: How long did families meet at your house?
Princess Sameera: Twelve years. Recently the United Arab Emirates recognized my service by giving me an award: the Best Woman Volunteer in the Arab world.
Cooper: Congratulations. (Turning to Dr. Al-Otaibi) How did you and Her Highness meet?
Dr. Abdulmohsen Al-Otaibi: Princess Sameera met my wife when my wife was studying at the university about 15 years ago.
Cooper: What was her area of concentration?
Dr. Al-Otaibi: Her focus was special education, and the princess noticed that my wife was interested in autism issues and invited her to create a class around autism. My wife got her graduate certificate in autism spectrum studies from the University of Arkansas. She now works with the Saudi Arabian cultural mission in Washington, DC.
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Cooper: You work there together?
Dr. Al-Otaibi: Yes.
Cooper: After your wife met the princess, how did you become involved with the princess’ projects?
Dr. Al-Otaibi: When I returned home to Saudi Arabia from DC one time, my wife asked if there was any way that I could work with her. I had already been writing articles about autism in Saudi Arabian newspapers, and so I asked the princess how I could help, especially as an interpreter in the US or Great Britain or other nonArabic-speaking countries.
She also nominated me to be the director of the Autism Society, which I was for two years. During my tenure, I donated my full salary to the society. I am very honored and proud to work with the princess. She’s an amazing woman who is making history as an advocate for people with schizophrenia and autism in the larger Arabian Gulf region and beyond that within the world. She’s now working with Autism Speaks in the US.
Cooper: In all of the work that you do around the world, have you been able to pool what you’ve learned and bring it home to Saudi Arabia?
Princess Sameera: It is my hope to duplicate some of the programs I’ve observed in my travels and to create a similar system in my country. There is one simple thing that people don’t think of that is very important for autistic children: a relaxation room. If there are just four or five students in the same class, and one student gets anxious or tired, the relaxation room is very important in the center, as upwards of 80 percent of autistic children have seizures.
Cooper: What challenges do you face in making your center a reality?
Princess Sameera: Finances.
Cooper: The Shafallah Center is funded through the Qatar Foundation. Do you have a similar foundation that you can tap?
Princess Sameera: The Ministry of Social Affairs provides services for autistic children, but in many ways it’s not as far along as the Shafallah Center.
Cooper: I thought Saudi Arabia had deep pockets.
Princess Sameera: (laughs) The country has, but we need to make our voices heard within the government.
Cooper: Do you want me to call someone for you?
(laughter)
Princess Sameera: Yes, the king.
Cooper: I don’t know if he’ll take my call! (laughter)
Princess Sameera: He will welcome you.
Cooper: Let’s go together and interview him for ABILITY Magazine.
Princess Sameera: Yes, that should be no problem, and we could talk with him about autism.
Cooper: And maybe that would be a part of our first issue published for the Arabic world.
Princess Sameera: That would be nice.
After the interview, Princess Sameera, Dr. Al-Otaibi and Cooper visit the YAI Network, which helps more than 20,000 people with developmental disabilities and their families daily through its more than 450 programs. YAI is headquartered in New York but is international in scope. Perry Samowitz, the organization’s director of education and training, greets them. A woman, who walked into the building at the same time as the Princess, Cooper and Al-Otaiba, was curious, and participated in the conversation.
Perry Samowitz: YAI was established in 1957.
Cooper: So you started it?
Perry Samowitz: (laughs) I wasn’t here in 1957, but I am the longest-serving employee in the agency. I’ve been here 35 years.
Princess Sameera: What kinds of services does YAI provide?
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Samowitz: We provide community-based services. As you probably know, years ago people in the US with intellectual and developmental disabilities were put into institutions. But in the 1970s, there was a lawsuit against the state of New York, and the judge ruled that those institutions had to close, and tens of thousands of people had to be resettled within the community. That was no easy feat.
When I started, we ran group homes of up to 10 or 15 people living together. The judge also said that they couldn’t just sit around; they had to be given something useful to do. (To the woman) Were you one of the first moms whose child was involved in that transition?
Woman: No, we’ve only been involved with YAI for 25 years.
Samowitz: Welcome! (laughter) So as I was saying, we had people living in group homes, and we had to look for work opportunities for them if they were higher-functioning. If they weren’t as high-functioning, they would go into what we called day programs, which has evolved into volunteer work in the community. They may not be high functioning enough to secure a paid job, but they can still be productive.
We believe everyone can be productive. When we went to Jordan, we met Prince Raad, who’s a wonderful man. We’ve all gotten very close. At that point in Jordan, they only had institutions. And Prince Raad said to us, “Can you help us? We would like to do in Jordan what YAI did in New York.” He also visited our clinics. We have special health clinics that serve people with developmental disabilities. The prince saw that and wanted to establish similar facilities in Jordan, also. If someone has to go to a dentist and they have autism, what’s it like for them to be in a dentist chair?
Princess Sameera: And what’s it like for the dentist?
Samowitz: Right. So we had to specially train the dentists, doctors and nurses.
Princess Sameera: Do you charge fees for your services?
Samowitz: No, the government pays. We also started preschools, because you can’t wait until someone’s an adult to help them when they have a developmental disability. Early support makes a big difference. So if they’re able to diagnose a child when it is born, they often will call us and we will begin to work. We’ll do assessments, offer in-home support for the families and early intervention. We have preschools to help children get a head start, and many of them wind up going to regular school.
Woman: I just want to talk about the support that YAI gives to the parents and the families. Very often, parents who have a child with difficulties don’t know what to do. One of the great benefits of YAI is their outreach to parents and the informal network of parents which has grown up around it and who are able to partake of YAI services. This includes support groups in which parents get together and speak freely. One thing that was valuable to me was a free course on applied behavior analysis.
Samowitz: We try to support a range of needs. We look at the big picture, from when a person is born until the day they die. One of the people I first worked with, who was 60 years old when I first met her and was in an institution, ultimately got married and lived to be 92. She passed away just recently. We supported her over the years.
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Princess Sameera: How many people do you serve?
Samowitz: We serve about 20,000 people a day, but that could mean something as simple as someone going to the dentist. Or it could mean a person who lives in one of our group homes—we have 5,000 of them—who goes to a day program, uses the clinic and gets a ton of services.
Princess Sameera: Are you just in New York?
Samowitz: YAI is funded mostly through New York State. We have programs in New Jersey, Puerto Rico and the Virgin Islands. But most of our work is in New York. We’re one of the biggest agencies in the country. Woman: And one of the best.
Samowitz: That sounds better coming from one of our parents.
Woman: Absolutely one of the best.
Samowitz: We do international work, as I said. We’ve been to the United Arab Emirates. We’re going to Saudi Arabia. We have a lot of people with expertise, a lot of staff who can help. We began the process in Jordan. We helped the Jordanians open their first two group homes. It’s been a great honor for us to go to the Middle East. It’s good for everybody.
You can learn more about our agency through the tour we’re going to give you shortly. We’ll go downstairs and see two schools, one clinic, one rehabilitation center and one employment program.
Princess Sameera: How is YAI organized?
Samowitz: We have eight agencies in one. We provide education, employment, health services, group homes, day programs as well as day treatment program.
Cooper: Is each one a separate 501(c)3?
Samowitz: Yes. The network is made up of different agencies. Each agency focuses on a certain area. Princess Sameera: But they are separate?
Samowitz: That’s right. How do you see us helping you in Saudi Arabia, given what we’re doing? What do you think the needs are? Princess Sameera: We could benefit from information about how you formed, what services you provide, as well as your strategy for reaching people.
Samowitz: A lot of that is on our website, which is extensive. But if it’s not there, we can provide it.
Princess Sameera: You mentioned designing system changes. Can you expand on that?
Samowitz: We help agencies design system changes. The best example I can give is Jordan, when Prince Raad asked us to go there and look at the programs and services that the Jordanians were offering at that time. So we toured the country and gave him an assessment. We were honestly a bit shocked. We didn’t want to be the bearer of bad news, but Prince Raad said, “Tell us the truth.” So we met with him and told him what we saw, which was not good for the most part. He then asked a minister of social development to meet with us; she, too, was surprised at our findings.
Princess Sameera: Did you present your information in Arabic?
Samowitz: Our slides were in Arabic and in English. Everything we did was translated immediately: all the written materials, the videos that we used. The people who were listening to us were seeing and hearing it in Arabic.
Cooper: So what happened?
Samowitz: They built a new institution in Jordan. So we said, “Whoa! Wait a second. Don’t move people into that building. Don’t take them out of society and segregate them. We can help you make it into a multipurpose center. You can make this into a school, an employment center, a community center, but don’t use it as an institution. Now we’re moving them in the right direction, but it takes time.
Princess Sameera: How much does the government give you to operate each year?
Samowitz: The rates are based upon the needs of each person. So someone with more needs—more profoundly disabled or more severely autistic—is going to require more services. So the rate for that person, I’ll make up a number, because it’s a little tricky, but it could be $150,000 a year.
Princess Sameera: Are you a government agency?
Samowitz: No, we are a non-governmental organization (NGO) funded through the government. In Jordan, the government seemed to pay for everything, while in the Emirates that was not the case. It was all private money. At least that’s what we were told.
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Cooper: The princess is looking for services that she could take to Saudi Arabia and make a cost analysis of what she might ask the Saudi government to do.
Samowitz: I don’t think it will be expensive. We’re not looking to profit from the services we offer. We’re just looking for some expenses to be covered, such as international travel, hotel accommodations and certain expenses. We never do it for the money.
We have consultants who can travel there, do the training and assess how to change the system to meet the needs of the people. We teach the model that we use, and yet we allow for cultural differences. But the point is to change the system and improve it.
Princess Sameera: We are capable of doing that. We discussed it last year, and I’m in the process of negotiating the terms. We have to change the whole system, the ideas and the attitudes. We’re capable of it. I will talk to the minister of health about the potential programs that can be provided. Tell me, do you have a program that can benefit those with intellectual disabilities?
Samowitz: Yes. That’s the population that we work with for the most part.
Princess Sameera: Why do you call yourselves YAI?
Samowitz: Back in 1957, when the organization was founded, a group of parents approached a professional and said, “Our children are leaving high school and they have nothing to do. They live at home.” So they started a Young Adult Institute to help these youths get started in life and find jobs. So that’s where it started, the original name. We’ve since buried it in the sand. (laughter)
Princess Sameera: We would need services as well that would address the needs of those with autism and schizophrenia.
Samowitz: We’ve been working with children and adults on the spectrum since we started, and we just opened a school for children with autism called the Star Academy. We use the latest advances, including applied behavioral analysis. We have a lot of expertise and work with people who are dual-diagnosed.
Princess Sameera: What ages do you serve at the autism center?
Samowitz: We start at birth, go into our preschools, and then we opened the Star Academy, so now there’s the school-age program. We also have programs for adults.
Princess Sameera: Please send me information regarding the projects you’re working on and a proposal for how we could work together. See you in Saudi Arabia.
Samowitz: Yes, you will.
(Editor’s Note: Samowitz traveled to Saudi Arabia as a consultant shortly after this interview.)
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VISITING THE YAI JOB CENTER
Satera Febus-Viera, the senior employment training specialist for the YAI Manhattan Employment Services, spoke about how her department works.
Febus-Viera: Employment and work training is one our most successful programs. It’s specifically designed for individuals who need to briefly brush up on their skills and can move directly into work. One of my favorite things about the program is that it doesn’t end. Participants are welcome to stay as long as they want to stay. We don’t promise that we’re going to get them work, but we do train them so that they can interview competitively. All the jobs they apply for, they deserve to get. And if they want to move into a different field, and we feel it’s a realistic goal, we help them.
Princess Sameera: Do you go to corporations and companies to find how to prepare your clients?
Febus-Viera: We do job development through all five boroughs of New York City, and we have a department that specifically reaches out to corporations to establish relationships and inform them about our population and the wonderful things they offer.
Princess Sameera: How long does the training take?
Satera Febus-Viera: It depends on the person; each individual is different. One may require three weeks, another three months. If it takes more than three months to train them, we may determine that the position may not be a great fit for this individual or a proper environment for them. If they need additional support we provide it. If not, we move to visiting them twice a month at the job.
Princess Sameera: Do you have some employment success stories?
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Satera Febus-Viera: Oh, I have a million of them. (laughter) If you look around here, you’ll see pictures of the actual individuals who were enrolled in our program and who were successfully placed at law firms, like this individual. (points to a picture) They were even willing to split the shift, so now we have two people working there. We also have people at Barnes & Noble.
We have a sister company called the Corporate Source, and we work closely with them to get positions for our individuals who are interested in maintenance work. We have a contract throughout the borough of Manhattan and in courthouses across the county. We even have a contract in Puerto Rico, where they place our people on jobs.
Princess Sameera: Do you train adults for employment?
Febus-Viera: Everyone here is over 18. We even have a 70-year-old in the program.
Cooper: Do you help them with resumés?
Febus-Viera: Resumés, interviewing skills-there’s no limit. Any services that are needed we provide. Online, offline, job fairs-we do it all.
