Blog
Anna: First and foremost, I am a parent myself. My son was diagnosed with severe autism when he was three years old; and like all other parents with children with special needs — we always worry about what is gonna happen to our children when we are no longer able to take care of them or if we pass away. So me and nine other families got together and said we have to build a system of support. To support our children with special needs — lifelong —- we developed children’s programs. As they start heading into adulthood, we develop adult programs as well. I would say we have programs at FCSN that serve people with developmental disabilities from birth till tomb. So it’s a lifelong service system that we are trying to establish. Because I, myself am a parent — I think supporting the parent is most important. Supporting the families. The families spend the most time with the children. If the family collapses, nobody can provide enough service for our individuals, so we always have that as one of our important programs — family support.
Anna: So first we reach out to families so that they know it’s not the end of the world — when your son or daughter is diagnosed with developmental disabilities. We are so lucky to be in California because we have the Lanterman Act, which is a law that requires the government to help us families and the individuals with special needs so that their lifelong needs are met. For people who are not native Californians, for example, I work a lot with the Asian community — it’s not apparent that the government is going to take care of the individuals with special needs. There’s a lot of education that needs to take place for the parent to know that they are entitled. We have to learn from other families and also specialists, so we can learn how to best support their life and meet their needs. So that’s how all of our comprehensive services and programs get developed.
Anna: For Asian families especially, we were culturally brought up to be self-reliant. They are really quiet about what is challenging in their life and about what they need. They need to generate everything for their family. It’s a real education process to let them know that they don’t have to face these challenges alone. The state government has services that can help. We have groups of families that have children of different ages with different experiences that they can share… There’s mentorship going on and so that they are not afraid and don’t feel helplessness and hopelessness. There is a community that is supporting them.
Anna: I mentioned before that Asian families are brought up to be self-reliant. We are trying to empower the parents to be advocates for their children’s rights, benefits, and services. That’s the empowering part… it’s not hopeless… you are not supposed to be quiet. In order to really get some major services and help for your children so that they can live a better life and have a better future, while we are gone — we need to learn advocacy. We have to learn how to advocate for equity and access to services for our social needs loved ones and our families. This is the project that we are happily heading so that we are helping families that feel they are alone and that will eventually affect their mental health. We want to prevent that very much.
Anna: Many families apply for Regional Center services, and when they get any kind of denial, they just go home and say ‘okay that’s life.’ We empower families and help the children as much as possible to prepare them to face the world during adulthood. Many of them have landed jobs or have gone through some sort of a college program. I think those are heartwarming stories. Many in the community are starting to see the abilities of the individuals with special needs. Even though slowly, people with developmental disabilities are getting employment — which is very important for their self esteem that they are contributing citizens in society. Some have even become professional musicians. Even those very talented individuals, at first the family didn’t think their children could do it. Actually, they were not daring enough to try because they were so afraid that their children would be failures… and hurt their self-esteem even more than before. We have been able to prove the families wrong for looking hopeless when they see their child has developmental disabilities.
Anna: Actually, inclusivity and engagement is in our mission statement. THE FSCM mission statement is to help individuals with special needs and their families find hope, respect, and support through integrated community involvement. So that is front and center in our mission statement. If we keep on being our children, then first of all they won’t have any kind of future because all they are thinking is that they will only face rejection, instead of people embracing them for who they are and applauding them for overcoming some challenges that they have. That’s why we started the special needs Talent Showcase every year. It has grown bigger and bigger and bigger. Be proud of bringing your children out in the community so that children have a chance to meet the community and so that the community has the opportunity to embrace a wonderful special needs loved one. Every year we train about 300 to 400 hundred highschool volunteers about how to work with individuals who have special needs. That’s integration and inclusivity in itself because those are regular developing peers for our social needs loved ones who are in school. A lot of the volunteers loved being with special needs individuals so much that when they go to college, they go into special education, speech and language pathology, OT, PT, and those things. I think that is the most rewarding success story that I would love to run into — we have seen so many. That changed a lot since I was growing up. I remember there was no opportunity to meet anybody with special needs, but now we do. That is so important for our next generation, not only our special needs loved ones but for the regular developing peers to have exposure early on to be close to a social needs individual.
Anna: In our program, employment and volunteering in the community is a huge part of the program. For example, in our center in San Jose, some of the day program students receive many awards from the city of Campbell for volunteering to be at the park services to help clean up the parks. As they are learning the skills to clean up the park, they are also contributing to the community and they feel so good when the city of Campbell and San Jose gives them awards for the volunteering that they do. Volunteering is a step to job training — later on, they can find actual employment, after they have volunteered. We have a coffee shop in San Jose where we train individuals to make coffee and also serve the community baked goods. They have community interaction with the customers coming into the coffee shop. We actually have some trainees who got hired by Panera Bread and other bakeries to do the work that they have learned in the coffee shop. Also, some of the students have different talents — we try to help them to develop that as much as possible. We are going to have an art exhibition coming up in August that features all of the artists at the day program.
Anna: I can only share some experiences for the service providers who are bicultural and bilingual. I think a lot of ethnic minorities are underserved by the Regional Center and school system. We were able to apply for funding from the State Department of Developmental Services to help with the equity and access to regional center services for all ethnic minority groups. If there is a service provider that offers bilingual and bicultural services to an ethnic minority group, look into applying for grants and funding to develop capacity for this ethnic minority population. One of the things I emphasize so much is that minority communities need a lot of hand holding. If there is a family support program like our Family Empowerment program, that helps our ethnic minority groups to navigate this and benefit — that would be so helpful for this population.
Anna: It is a process because each of the ethnic minority groups have brought up that it is very hard to change your mindset, but definitely you can do it. FSCN being in existence for 28 years. We work on changing the mindset so the Asian community can be proud of their children and be out in the community with their children. Also, advocate and know that their rights need to be heard. The most empowering thing is — you are not fighting for yourself, you are fighting for your children because your children are vulnerable, they don’t have a voice. If you don’t speak up for them, they are going to have a bad life. As a parent, we don’t want that to happen. I have now become the squeaky wheel for my children’s sake.
Anna: I always bring up the statistic — we have an unemployment rate of 6-7%, we scream bloody murder that unemployment is really high and get the politicians to do something about it. We only have about 2-3% of people with developmental disabilities who are employed. The unemployment rate is 93-94% of people with developmental disabilities. Give them a chance to prove that they can be the best worker or best employee you will ever hire. I think the community has to realize to not label people with disabilities that they have no abilities — that is the farthest from the truth. People with developmental disabilities have many unexplored abilities waiting to be found. A lot of our students framed their first paycheck instead of spending it.
Anna: We are here to create as much opportunities for our Individuals that are long overdue. In terms of employment, in terms of housing, in terms of all the things that will bring a good future for them. Until they can have equal access and treatment from the rest of the community — we will continue to work on those opportunities and exposure, and advocacy to get that kind of equity and access to benefits, treatment and to employment, and to housing.
Dana: I think like Anna, this work is not done by any means. I see us continuing to be advocates, to be a resource for the families… out there in the community. I see us continuing to expand our programs because the need continues to grow. That’s likely to take the form of additional homes. I think the organization that Anna has built and the one that we have built has the chops and bandwidth to do that.
Hadiyah: Both of you have set a foundation for the generation that’s coming behind you. Whenever it is time for you to pass on the baton, I’m hoping that whoever is reading this gets the message loud and clear that the work isn’t done. But also that they hear me say, ‘thank you on, we who are about to take on the baton. Thank you for laying the foundation and the groundwork — we’ll make sure not to drop it.
I encourage all the heads of the service-providing agencies to train more people to do all that they do. The demands are so high, that the existing service cannot meet everybody’s needs because it is a growing population. We also need to train enough service providers to provide more service and have the right attitude and the right direction. I feel that both me and Dana have the responsibility to train more people to do the work that we, kind people do. I want to share a little personal thing — I had a stroke a month ago. All of a sudden it’s a wake up call… I know, first of all, I cannot take care of my own child. If you cannot find a system that can basically take care of your child when you’re gone…you are worried about that. At the same time, I established the system of FCSN… if I am gone and FCSN collapses, that would be even a bigger sadness because it’s an already established system that only relies on me. That’s why all of the head of great agencies need to train up enough people to continue the work that they do and establish more agencies to do that kind of work. We have to make sure that our special needs loved ones are taken care of lifelong, we have to make sure that all of the other special needs individuals who belong to other families are taken care of as well… and that is to train more people.
Dana: If I had to start it over, I’d figure out a way to replicate it, grow it — in a much greater fashion. There’s such a need… being more aggressive in terms of replicating it would be one thing.
Anna: Actually, we have about 40% of individuals that we serve that are not Asian in our programs.
I totally agree. Not all housing models fit everyone. The thing with the Asian community — they hardly use any Regional Center Housing services or supportive living services. Some refuse to use any group home services. They just keep their special needs loved one at home — which is not ideal. They will never have any experience living outside the home. I always advocate for Asian families to look further — what are you going to do when you are gone? Nowadays, SP9 opened up some new opportunities for using your own house to build ADU’s. We encourage some of the families to look into that as an option, rather than keeping them in the same building as the parents… slowly, set by step trying to detach the parents from their spell needs loved one so they can get use to that and also so the social needs loved one to also be able to live in the community with other members.
Dana: We have always embraced diversity. I always see such value in it. It is so natural — if you are trying to create a culture… it’s not ethnic, but it has values. Some of those values are simple respect for others, the act of inclusion, being a part of something that’s big, that’s great… getting value from growing… whether it’s residents growing, or us as an organization making mistakes and learning. Hopefully that’s sort of the legacy that you pass on… it’s that your culture embraces all of those values and of course for me, I’ve learned so much. I often tell the story of holding our International Day parties… everybody dressing in their culturally preferred garments and sitting down to having an Ethiopian tea service. Those are invaluable. You could never learn those lessons by isolating yourself. I’m proud to say that we have created a culture.
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