November 2009 - Family Advocacy: Finding Common Cause |
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Family Advocacy: Finding Common Cause
Unlike Ms. Brown, most individuals who advocate on behalf of families of children with disabilities are not attorneys. Their professional backgrounds vary, but what they have in common are strong mediation skills, a desire to understand a family’s unspoken cultural agenda and an appreciation of a school’s viewpoint. Advocates care deeply about the welfare of children and possess deep fundamental knowledge of a family’s options, a school’s legal obligations, including those related to assistive technology and the skill and dexterity to push the appropriate buttons and pull the levers that nudge the process forward for the benefit of the individual who matters most: the child with disabilities. This issue of the FCTD News and Notes is dedicated to the skilled and committed advocates who aid families of children with disabilities in developing more fruitful relationships with schools and school systems nationwide. Vivica Brown, Esq. Speaks “My son’s educational disabilities started when he began school,” Ms. Brown recalls. “He was in speech and language services from the beginning. Although he was born before the advent of autism awareness, there was suspicion on my part as I became more aware of how children who are on the spectrum present, that he had an autism-related disability. His autism-like disability was identified only after I became very insistent.” The educators she encountered, she says, rebuffed her insistence. “By the time he repeated ninth grade they argued against the existence of a perceptual reasoning disability.” After she insisted on an independent education evaluation (IEE) a neuro-psychologist determined that her son had Non-Verbal Learning Disability with Asperger’s characteristics. “I felt relieved to finally get an answer to a question I’d been asking since he was three years old.” In addition to that disability Ms. Brown’s son also has a specific learning disability “which in the past had been described as the difference between his IQ ability and his achievement level – an unexplained discrepancy.” He also has some visual and verbal language processing delays. Although she is an attorney “I was having a very difficult time navigating the maze involved in arranging implementation of services for my son. I experienced trouble getting him evaluated because he wasn’t a behavior problem in that he didn’t have disability-related behavior that was offensive in the early stages of his education. He was flying under the radar. It was frustrating and difficult for me. I thought ‘My God, if I’m having difficulty with this, how are other parents faring?’” As a result, she began consulting with families a few years ago. “I jumped into IDEA issues to find answers for my son when he began demonstrating disability-related behavior. It’s my opinion that these behaviors were due in large part to not having his needs met. This was the catalyst for my new career in family advocacy.” Today, through her company, Exceptional Student Advocacy (http://www.exceptionalstudentadvocacy.com/) of Stone Mountain, GA, Ms. Brown provides advocacy services to help families of children with disabilities obtain necessary educational accommodations, modifications and placement. She collaborates closely with local psychologists and psychiatrists. “My son also has a mental health issue that was not obvious at the outset which spurred me to become involved with the National Alliance on Mental Illness (NAMI) (http://www.nami.org/). It was that association and my son’s educational difficulties that led directly to the founding of my company.” Supporting our interview with Vivica Brown are resources related to family advocacy and the importance of understanding cultural differences as they pertain to the ability of families of children with disabilities to obtain and implement needed school services, including AT, for their children. We also feature members of our Knowledge Network. We in¬vite you to contact these members for further information. Please share this newsletter with other organizations, families and professionals who may benefit from it. We invite you to visit us at http://www.fctd.info. We welcome feedback, new members and all who contrib¬ute to our growing knowledge base. “Every Child Can Learn”: An Interview with Vivica Brown, Esq.,
“It’s been my experience that the special education and IEP process is extraordinarily difficult for many families for many reasons,” Ms. Brown says. “Parents are often initially in shock when their child’s disability is revealed unless a disability has caused a child to experience difficulties from the beginning. However, I deal mostly with families whose children have ‘invisible’ disabilities. Those disabilities are not necessarily apparent upon visual observation but nevertheless have devastating effects on a family and on a child’s self-esteem and academic achievement. The shocked families go through stages that are familiar to those who learn that they have a serious illness. As an advocate, my task is to get beyond that initial shock and aid families in accepting the fact that help is in fact available for their child in a way that precludes negative labeling in the future.” For families still in shock, the IEP process “is incredibly complex, without regard to a parent’s educational background ,” she remarks. “Parents often don’t even know where to begin. Some begin and end with a child’s teacher, in which case the issue could remain sequestered in the classroom. If families fail to use the exact language or process to trigger an initial evaluation, that child may only receive informal assistance. In many cases, only when a situation escalates does the actual special education/IEP process commence.” Fairness Issues On a personal note, she says, “I was very conscious of the fact that my son, who has multiple invisible disabilities, did not have what he needed and that doors closed on me in whatever direction I turned in my attempts to make sure he had the requisite accommodations to be judged fairly. My son’s situation is further complicated by the mental health diagnosis he received when he was16 and is an ongoing advocacy issue for him. I’m glad I have the capability to help him. So often parents are at a loss as to what to do and how to do it. “ “A State of Total Confusion” She says that she has been told frequently by parents “that they endure IEP meetings in a state of total confusion and then depart demoralized. It doesn’t matter how kind and considerate the educators on the team are – and most are – the meeting itself and the language of education can be baffling and intimidating,” she notes. “Many parents fear admitting that they are unable to follow the meeting because they feel personally responsible for their child’s disability or disability-related behavior.” In addition, she points out, many parents are unaware of their options. “Frankly, the IEP process is labyrinthine and assistance is required to navigate it. It consumed my existence when I was first introduced to it as a parent of a child with disabilities. Often families who are dealing with their child’s educational disability must let other family issues go untended because of the focus and effort that the navigation process requires. It can actually act as catalysts in a family’s implosion.” Signing It Away An actual evaluation of a child that involves a full-blown battery of tests to determine the ongoing extent of the child’s disability is required every three years. An IEP review, on the other hand, is performed annually, she explains. In their confusion, she says, families sometimes sign away their right to both, including the reevaluation, a surrender which she terms “scary.” To Ms. Brown, “a three-year-old who’s initially eligible for services under the SDD (Significant Developmental Delay) eligibility category could be very different at six years old. Often children change within that three-year span, which is why, at a minimum, schools are required, unless parents and their child’s school agree otherwise, to conduct a follow-up reevaluation. I’ve experienced situations where parents have signed away their right to that reevaluation because they don’t understand what the evaluation is and what it could mean for their child. It could mean additional services or services that are more pertinent than those the child is currently receiving.” If a family questions the extent of a child’s disability “I usually encourage the parents to obtain a private neuro-psychological evaluation. When the family gets the private neuro-psych I ask the parents to be certain that the professional provides recommended courses of action, recommended teaching methodology and recommended software.” Depending on the professional’s recommendation, “we do our own independent research to expand or fine tune recommended accommodations or interventions so that we have ample information before we walk into the IEP meeting. From that point on we usually obtain full cooperation unless we ask for costly accommodations. At that juncture we have evidence to provide for a due process mediation or hearing should one be necessary.” Cost is a factor that impacts schools and families, with both hard-pressed for resources, she points out. “In these difficult times many families lack the funds to pay for a private evaluation. As an advocate I’ve asked families, especially if they have public insurance and a diagnosis for their child, to go to the local children’s hospital to have a neuro-psychological evaluation performed so that they can obtain a private report -- this examination would be covered by their insurance – to ensure that they have identified their child’s disability. To the extent that families want to share that report with their child’s school they would bring the evaluation to the school and advocate for certain services based on the evaluation results.” However, she cautions, schools are obliged only to consider results from a private evaluation and are not required to incorporate the results into the IEP. A major challenge that often looms for parents: obtaining time off from employers to attend annual IEP review meetings or other IEP team meetings. “Instead of asking to change the time of the meeting to accommodate their work schedules parents too often will agree not to attend because they don’t understand that they are members of the IEP team and can thus request that the meeting be rescheduled for their convenience.” She sees this occurring more frequently in the reevaluation process, where families sign away their right to a reevaluation by conceding that the reevaluation is unnecessary. The result, she notes, “is that a child can go six or even nine years with the same evaluation, which becomes woefully outdated.” The Cultural Divide: a Different Twist
She says that regardless of cultural differences “let’s do what’s in the best interest of the child. If families and schools are unable to agree on what to do then it’s time to bring in an independent party who will put all parties on the same page. If the emphasis is on cultural differences and distinctions vis a vis disabilities rather than on commonalities, the objective, providing needed help to a child in need of it, can be completely obscured.” Working-class families, in which parents perform shift work, typically approach IEP and other meetings with school officials differently from parents who are salaried employees, she insists. “Working class families often have more restrictions on their schedule and therefore have a limited ability to get time off to attend meetings and to use lunch hours to conduct research about their children. Therefore, they approach meetings with dread, not only because they dread the meeting itself, but because they also dread negotiating time off with their employers to attend." "This is especially difficult, they feel, because their children do not have obvious visible disabilities. If the child doesn’t look like he/she has a disability, some of these parents may say, ‘Not my child; my child is fine.’ This approach is very tough on the child, obviously. Many of these parents believe there is a stigma attached to disabilities and to special education in general." “My Job Is to Gap the Mistrust” She adds, “We try to get past the cultural mistrust, which often exists among working-class parents who regard themselves as less educated than the teachers and other education professionals they’ll be meeting at their child’s school. Many are self-conscious that their educations ended at high school graduation. There are African American families who might be stand-offish about dealing with white teachers and administrators, creating an aura of cultural mistrust. My job is to gap that mistrust.” With African American families and other minority families she says, “I know going in that if the child in question does not get what he/she needs we’ll quickly be faced with an avalanche of other issues that can cascade.” With respect to how other cultures approach disability, she states, “there is more consistency and uniformity among minority cultures, especially, but not exclusively, African American and Caribbean cultures.” There are of course points of separation, she concedes, “but the commonality is a general mistrust of the school system.” Her way of gapping that mistrust “is to talk to these families very frankly about the potential danger for their children should the families’ decide to leave a child’s disabilities unaddressed. I advise parents that a way to help avoid dangers that could include juvenile delinquency and adult detention issues is to close the mistrust gap immediately and to get help for children right away.” With respect to the use of assistive technology, she states, “there is a tremendous gap.” Disparities in families’ socio-economic status make that gap very pronounced, she says. “Families lower on the socio-economic ladder may not have a working computer in the home. To have access to a computer their children must go to a local library or wait their turn at school, where computer availability can be very limited.” Access, however, is not limited at all schools, she remarks. “I saw a news report recently about an Atlanta area private school that was providing all students with Mac Notebooks.” Imagine how an arrangement like that could help kids in public schools particularly in working class neighborhoods. Access to a Notebook may not be possible, but universal access to a computer terminal would mark a significant improvement over little or no access at all,” she comments. Unfortunately, she points out, “the socio-economic divide makes such arrangements very rare for schools and for families in working-class or poor districts. Even when a family manages to acquire a PC, if it goes down, access to technical assistance and the money to pay for that assistance, is rarely available.” Often, she says, “a child may know more about the computer than the parents, yet the child’s computer knowledge in real terms might also be limited. Taking it to the next level – the ability to access the up-to-date available software – is truly aspirational for these families.” Children as Translators “I don’t approve of the practice but I understand its occasional necessity. I’m concerned about families that go into those meetings without an advocate, because advocacy is not as simple as translating language. I don’t think children should be put into the position of advocating for parents as part of the translator role. The issues are far too complex. I believe that the school should provide translators and advocates for those families.” In the Atlanta metro area, she says, “the districts have parent mentors who are employed by the schools. Many of the parent mentors are very open with information and could help parents and translators. I’ve had some good experiences with parent mentors – and some not-so-good experiences. One parent mentor in particular is very informative and does an outstanding job with sharing information. However, I don’t know what happens in situations where there is disagreement. How does a parent mentor voice disagreement with the district that’s paying her?” “For example, we manage my 19-year-old son’s Internet access, because of the inherent dangers for him in inappropriate social networking, which can also have a long-term detrimental impact on future job opportunities due to intensifying employer scrutiny of such sites.” Some children with developmental disabilities or bipolar disorder, for instance, can be especially vulnerable to social networking abuse and other stimulations of the web, she notes.
She believes that children with disabilities should have websites designed specifically for their needs and that disabilities-related websites should be created in languages other than English. “I am working with a family from Nicaragua. I spend time translating education/legal jargon into plain language for the parents. I do that for my American born families as well. The educational language is very dense and needs to be streamlined and simplified so it can be understood by individuals who are not educators, advocates or attorneys. Instructions in languages other than English would help families feel more open to the concept that a child could benefit from these services and not have to approach the concept with doubt, confusion or mistrust, which is a disservice to the child.” “I’m a Hybrid” “There are some schools that tolerate advocates and others that thwart my role by refusing to communicate with me even after I inform them that I have authority from the family to advocate on the family’s behalf." These schools, she alleges, “continue to contact the family but not me. When the school learns that I’m an attorney but am not there in that capacity but instead am serving as an advocate only, I try to allay their concern by explaining to school officials how an attorney-client relationship differs from the relationship an education advocate has with a family.” Advocates are not required to be attorneys, she points out. “Many advocates nationwide have many years of experience and could be better advocates than some attorneys. The advice provided is not considered to be ‘legal’ advice. The relationship between the family and advocate is not protected by an attorney-client privilege.” Therefore, she notes, discussions, emails or other communications are not precluded from disclosure and can be subpoenaed as evidence in a due-process hearing or beyond. “However, if a family hires an attorney to represent them in the IEP process, that act in itself can engender contention, and the information discussed and advice provided in writing or otherwise is typically protected by the attorney-client privilege and is not usually subject to disclosure.” Time and time again, she says, “I have to explain that although I am an attorney, I am not serving in that capacity. I am an education advocate only. I reassure schools, ‘I am not here to create opposing sides of an issue with you. I just happen to be a lawyer whose child has a disability and I am here to help this family obtain an appropriate IEP for their child as an advocate only. The family can hire an attorney to represent their legal interests in due process hearings as the family desires.” Ms. Brown prefers to be involved in the early rapport building portion of the family-school relationship. “It’s more expensive for a family to hire an attorney whereas as an advocate I can reduce my fee and serve families who could not otherwise afford outside expertise. Families get more from me. I have formal legal training and experience. I’m essentially a hybrid advocate.” Avoiding Uninformed Consent: Read the Document; Get Sound Advice “It’s difficult to achieve informed consent if parents are expected to consent on the spot without having read and understood the small print in a document,” Ms. Brown declares. “Parents who are well-educated or who have more experience still need – and should take – the time to read and comprehend a document’s every word. Most parents don’t do that; I do it for them.” She says she has frequently advised other IEP meeting participants that “the child’s parents and I are going to need time to digest the information before consent is provided.” She adds, “I’ve heard many reasons why that is not possible, why a decision has to be reached immediately – but that is not the right approach. Rushing a decision is not in the best interest of the child, the parents – or even the school.” Nevertheless, she admits, parents often feel pressure to quickly consent. “When parents consent on the spot rights are often waived, like the right to reevaluation, like agreeing not to participate in an annual IEP meeting. I immediately tell my families: ‘Do not sign anything without first discussing it with me and making sure that we have had a full review.’” She says she prefers to teach families to be informed and to read and understand the small print rather than to assume those responsibilities for them for an indefinite period. “I teach them to read these agreements, to understand the language in them and how to discern the most significant information contained in a document.” Parents, she comments, “may skim a document and assume that they understand it, but they are usually taking the words at face value and do not look beyond the document. Parents need to understand not only the words on the page but also the potential long-term impact of consenting or not consenting to the document’s terms.” Even when supported by an advocate’s expertise and coaching, it can take years for parents, no matter how well-educated, to become fluent in the ever-growing body of information and law related to their child’s disability. Even then, she remarks, “their fluency is in the narrow information niche that impacts that specific child. Later the same parents may have another child with slightly different disabilities, which restarts the parental learning process from scratch." Information Sources Are Available The problem, she points out, “is that many of the families I help are unaccustomed to seeking self-help resources. Even parents who may have the desire to seek out those resources lack the skill to do so and may also be intimidated by the system. Advocates are a necessity for these families as is advocacy training.” Training opportunties from a variety of sources are available, she notes. “I offered training with several other speakers through the National Association for the Education of African American Children with Learning Disabilities (NAEAACLD). The organization’s president and founder, Nancy Tidwell, sponsored training for individuals nationwide at no cost who joined a webinar to receive the training.” Ms. Brown envisions providing gratis training through local library systems which would make the trainings available for parents. “The goal would be to help make parents aware of these training opportunities through organizations focused on the educational welfare of children. That kind of direct training would benefit many parents who might not otherwise have access to it.” Recently, she conducted a training for Dream Makers Youth Foundation (http://www.dreammakersyouthfoundation.org/), which provides educational recreational and therapeutic services to children K-12 in metro Atlanta. “The parents were thrilled. They had been unaware of a functional behavioral assessment (FBA), for example, and whether such an assessment was advisable for their children whose behavioral issues were very likely directly related their disability. I advised them that the results of the FBA could be included as part of the behavior goals in their child’s IEP or as part of their child’s behavior intervention plan. These parents had no awareness of this – and they had children in the special education system for several years.” Just beyond awareness looms the issue of requesting an FBA and implementation of results. “If parents approached their child’s school about obtaining and implementing results of an FBA, the push-back and red tape would likely prove to be very discouraging. This is where an advocate can help.” Teacher Sensitivity Training: Parents and Teachers as Allies Since her son’s mental illness diagnosis she has been involved with the National Alliance for Mental Illness (NAMI) (http://www.nami.org/) and will soon be a NAMI trainer affiliated with the organization’s “Parent and Teacher as Allies” program. The program, she explains, “is designed to provide a level of sensitivity training for teachers and administrators regarding children with early onset mental illness and how it presents.” The program is relevant, she says, “because many teachers are interested in helping these children and there are children in classrooms where some teachers may not be as flexible as they need to be.” According to Ms. Brown, “When teachers have a child with a disability, especially a disability involving mental illness – an invisible disability – in their classroom they must show some flexibility in the way they cope with disability-related behavioral disruptions. Teachers who take a hard line on issues that may not be disruptive in the context of a disability’s characteristics place an unnecessary burden on the child.” A child like her son, for example, “who was diagnosed with ADD in middle school, who daydreamed in class and looked out the window ought not to be placed on in-school detention because he demonstrates a lack of focus.” The NAMI program, she explains, “introduces teachers to the early signs of possible serious mental illness, like bipolar disorder, which could initially present itself as ADD or ADHD. We will try to enhance teacher sensitivity to mental illnesses like bipolar disorder, major depression, OCD and other social phobias.” The training, she explains, is focused on exposing teachers to characteristics of early onset mental illness to perhaps avoid unnecessarily penalizing disability-related behaviors before a disability is determined to exist. “We’ve just received NAMI training on the state level. It’s our intent to roll out ‘Parents and Teachers as Allies’ in the metro Atlanta area in early 2010. We’d like to go into the schools and conduct these trainings, which encompass 1-3 hours, on teacher in service days. The training consists of a facilitator, parent of a child with early onset mental illness, a child with a mental illness and an educator, she says. Cultural sensitivity, while not a pillar of the program, comes into play. “We want to talk with the teachers and administrators about the cultural sensitivities involved with early onset mental illness.” In other words, she continues, “there may be instances where a teacher spies early indicators of disability in a child but the child’s parents may be hesitant to talk about the disability and may have to be approached differently.” Disabilities and Discipline “I explained that once it is determined that there is a manifestation of disability as shown in the child’s behavior, the team should take a different approach to discipline. The team should amend the IEP to provide for a behavior intervention plan for the specific behavior and/or amend the behavior goals to provide the child with additional positive reinforcement in order to redirect the negative or unwanted behaviors. Is the child acting out because he/she does not want to be put on the spot to read in the classroom?” Often when a parent phones Ms. Brown to tell her that the child has been suspended, “the parent will say to me, ‘But I told the school there was something wrong with my child.’ I’ll ask the parent, ‘How and to whom did you express that to the school?’ There are many children with suspected disabilities who have the exact same protection as children with IEPs. But families have to trigger their protection in certain ways. At least 60% of the families that approach me about children with discipline problems have situations where children have suspected disabilities of which the school is informally aware. This happens a lot to African American families regarding their boys.” She Has a Dream FCTD Collaborates with the SEAT Center The FCTD has collaborated with the Special Education Assistive Technology (SEAT) Center Professionals who work with family members are encouraged to share the survey link with interested family members with whom they work. The findings will be presented on the FCTD Web site late in January. Thanks! RESOURCES ARTICLES Assistive Technology Information for Families Have a Nice Trip: Metaphors for Parenting a Special Needs Child
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