Helping Parents and Advocates Improve
Educational Results for Children with Disabilities
Helping Parents and Advocates Improve
Educational Results for Children with Disabilities
by Rosita Castillo
Reprinted with permission from PAVE PIPELINE, February 1999, by Washington PAVE, 6316 South 12th, Tacoma, WA 98465-1900, 253-565-2266 (Voice & TDD), 253-566-8052 FAX, 1-800-572-7368 in WA, Email: wapave9@washingtonpave.org, Web site: washingtonpave.org
After checking my file organizer for the tenth time, I am waiting for Sherry to answer her home phone and hear from her a final comment of reassurance that everything is going to be alright. She is on her way out, but takes a few minutes to give me that final boost. "Go out and do it!" she tells me, full of that determination I have always admired from the first day we met. She recruited me without even knowing me to assist with interpreting for a family she was helping in Sunnyside. Years later I would assist the same family with an SSI application for a second child with a disability: The fact that Sherry had worked with them in the past made things easier for me. That same family attended parenting classes, an SSI training and a Parent Leadership Seminar in which PAVE participated in various capacities. With this family as well as with many others, I have learned that it is not always the case that Hispanic families ONLY feel comfortable with Hispanic providers. Time after time I have interpreted for families who express gratitude for all the work, caring and understanding they have felt coming from Sherry. I do not mean to make her feel uncomfortable when I say these things about her, but I am using her as an example that while many argue that language, culture and other factors determine the success of service delivery, it is not necessarily true in all cases. With all of Sherry qualifications, and appropriate, interpretation to and from parents, the quality of services can have high ratings. The lesson learned from the years working with Sherry where she is the primary service provider, and I act as the interpreter is the following: One does not need to be bilingual, from the same race, or even from the same community to provide effective services to a family. Knowledge of the subject matter, preparation, understanding, and a sincere desire to assist families breaks all barriers, of race, culture or language.
Being, Hispanic or Latina or Chicana or even Mexicana does not make me an "expert" in the effective delivery of services to any particular group. I am sorry to disappoint you if you were thinking of inviting me to present and allude to the difficult task of laying out a "to do" list that will work for all. I learn as I work everyday, not just in the Hispanic community but in every situation I encounter. When someone asks me a question referring to an Hispanic family using the term "your people", I have to hold my impulses not to answer something like, "I did not know I owned anyone. What I try to do is understand that person's reality and where he or she is coming from. Diversity is not only true for the Hispanic community. But I will give a few examples of some of the differences, as well as the similarities that need to be taken in consideration when working in these communities.
One of the biggest mistakes that service providers make is to assume that if people look alike, speak Spanish or live in the same community, that they are all Mexicans. I have worked with families from different parts of Latin America like El Salvador or Chile. While there are many similarities in common like language spoken, likewise there are a variety of differences that make each family unique. Even when we are talking about what part or region they came from in their country.
The families that come from Mexico come from different states, realities, level of education, and set of values and beliefs that could either enhance or hinder the effectiveness of the delivery of services to them. I have worked with families that have a history of advocating for their children in Mexico, are very familiar with their children's disability and can tell you exactly what they expect from you. On the other hand, other parents have some understanding of the disability, but because of their beliefs, expect what you perceive as a miracle. Learning as much as you can about the particulars of each family will greatly reduce your frustrations in trying to do the best you can, even if you do not get the expected results. Not assuming anything has always worked for me, if in doubt, always ask. This is also true for other races. One can never approach every situation the same way based on race or culture, or even based on the disability.
One of the comments that I hear from some parents is that their son or daughter "is going to be cured someday." It is very difficult, especially over the phone to attempt to give the parents facts about the disability of their child. The way the information is presented can make the difference in how it is accepted. One can not ignore that their reality is based on years of believing what they believe. I learned this early in my work with their way of thinking. I have worked with families that even, after many years of living with the fact that their child has a disability, they never stop hoping for a miracle. They will make the journey to Mexico and take the child to their saint of choice or with a "curandero" or "curandera" who has been known to "cure" children like theirs. The lesson learned from this experience is that one can only provide a family with a knowledge base about the disability, resources available and offer assistance in assuring successful delivery of services. What a person chooses to do with the knowledge acquired, or their beliefs about the possibility that their child might be different and be the recipient of a miracle, is their right.
This could also be an important factor to consider when seeking resources for Hispanic families. If a person has been here for a number of years, chances are they are familiar with some resources, how to access them, and could speak limited to functional English. With a family who has just arrived, a priority should be helping them get acquainted with the area and giving them base knowledge to meet basic needs first. By jumping straight into finding resources for their child with a disability, when they don't have a place to live, could prove to be overwhelming for some parents. In discussing this point with a case manager of another service providing agency, I was disappointed to hear her comment, "well ... if mama really wanted our services she would have come for her first appointment!" "She not only missed it... but didn't even call to cancel!" The level of education, comfort, and trust families develop with agencies or service providers depends on how well we interact with them. Many times the length of time in this country does not guarantee success. There are those families who have chosen to remain isolated and have minimal interaction with the rest of the world. I have encountered families where the mother has taken care of a child with a disability for many years, when in fact she qualified for services, but chose not to accept them.
Nothing is more frustrating for me than seeking resources for a child or adult with a disability who is not a legal resident. But this is also another reality one has to take into consideration in assisting Hispanic families. The number of undocumented families is higher in some areas, making it difficult from different angles. First, there are limited resources available to help this population. Secondly, some of these families will actually close their doors because they fear deportation. A number of them are awaiting their legal residency and fear the worst. It takes time and patience to put together a menu of programs they qualify for that would not jeopardize their process. For many of these families it is necessary to go knock at their door and understand why everything turns silent when you start getting out of your car.
I have sat in "expert" presentations where the time factor is explained to future services providers in the Hispanic community. "Hispanics," they say, "live on a different time table than the rest of us." I have given much thought to that and feel that it almost has become a self fulfilling prophesy to some of us. On the other hand I have learned that it is not always true for all Hispanics. I have been to appointments where I have told the family to be there half an hour early to insure they are there on time. To my surprise many parents have not been half an hour early, but one whole hour! Again the lesson learned is that one should not make assumptions when it comes to anything.
I would like to leave the following thoughts from lessons I have learned in working with Hispanic families:
