In June of 2006, I read an article in Commentary that scared the bejeezus out of me. The article was titled, “Why Have Children?” and was authored by Eric Cohen. After doing additional research, I wrote an article of my own titled, “Plugging an Important Hole in America’s Economic Dike: Preserving financial resources for a troubled future by educating the disabled” and hosted it on KPS4Parents’ web site at https://kps4parents.org/08_2006_article.pdf. I’m not going to repeat?everything you can read for yourself in these other materials, but I do have a few points to make. Here’s the Big and Scary in a nutshell: Our economy is a wreck. The biggest demographic cohort among us is the Baby-boomers. More and more of them are hitting what has traditionally been regarded as retirement age. A lot of them took a huge hit when the stock market crashed in the early 2000s. Recent developments with the real estate market, which has long been touted as one of the best places to invest, have taken their toll as well. Nonetheless, many Baby-boomers have assets for now and that’s giving many of them a false sense of security. With advances in medical science being what they are and what they promise to be, it’s not going to be long before living well past 100 is common. If a person retires at 65 and lives to 100, he or she will have to stash away 35 years of living expenses, taking into account the rate of inflation and the rate at which long-term healthcare costs are increasing. That’s a lot of money to sock away, particularly if the things this person has invested in over the years have failed to produce the additional income expected or the person has actually suffered investment losses. Well deserved motor home trips, vacation timeshares, and cruises to exotic locations may seem affordable now, but as some of these folks continue to spend on the fun things in life, or even if they’re just spending down their savings on day-to-day living expenses, at some point, a certain percentage of these folks are going to experience a medical situation that ends up wiping them out financially and then, in the most medically fragile state of their lives, they’ll go broke and end up dependent upon the Medic-Aid system at taxpayer expense in some Godforsaken nursing home for the remainder of their days. This may not be a huge percentage of the Baby-boomer population, but we already know that, statistically speaking, some percentage of our elderly have been ending up in this kind of a situation for a while now. Even if the percentage stays relatively the same, the sheer numbers of the Baby-boomers means that their percentage will translate out into a whole lot of people. This is going to place a tremendous burden on the taxpayers. At the same time, autism is occurring now at epidemic rates. With some sources insisting that we’re at an autism occurrence rate of 1 out of every 144 children at this point, we have to acknowledge that we are starting to get slammed with a need for increased spending in special education services. While there are certainly shining examples of how things should be done, there are also horrible travesties that most people don’t even know exist. We are a long way off from having a well-functioning special education system. Over the next 10-15 years, we’re going to see our workforce continue to shrink, particularly relative to the amount of people who will increasingly qualify for publicly funded services. Young people will become less and less?able to afford to have families and each generation will get smaller than the ones before it. The smaller generations that come after the Baby-boomers are going to end up bearing a significant share of the financial burden for the Baby-boomers’ care during their elderly years.? With each generation getting successively smaller, combined with the fact that so many jobs are going overseas that there is less domestic work to be done, what we’re going to increasingly see is a shrinking pool of taxpayers having to support an increasing pool of tax-dependents. Before this spirals hopelessly out of control, we need to pull out all stops and do as much as we can to educate all of our children well, including those with disabilities, so that we can produce as many competent taxpayers as possible and decrease the number of tax-dependents they will have to support. That means we need to invest in special education now, when these young minds are still malleable and ripe for learning. Unlearning bad habits once these kids reach adulthood is a nearly impossible task, particularly for more severely handicapped children. I don’t think you can appreciate that, really, until you’ve had a 23-year-old woman with cognitive impairments and hyperphagia lay down on the pavement in front of a city bus and refuse to move until you promise to take her to McDonald’s for french fries. I’ve had that experience and it was the direct result of a horrendous failing on the part of the agencies that were responsible for her in childhood to address her problem behaviors in a constructive way. At the time, it was my job to teach her more appropriate positive replacement behaviors to those she was engaging in, which meant teaching a person with a serious brain injury how to do something she didn’t necessarily understand or appreciate instead of what she had been doing all of her life. Whereas, working with children who have not yet formed very many bad habits can be a lot more fruitful. Children are simply more receptive to certain types of new learning than adults. While local education agencies may be operating out of a “not out my budget” mentality, they fail to appreciate (or don’t care about, or feel entirely powerless against) the bigger issue, which is the long-term cost to society on the whole that failing to provide special education services appropriately to eligible students now will cause. The costs of incarceration are exorbitantly high and generally fail to prevent recidivism. When you look at who is populating our prisons, you will find an enormous number of learning disabled, emotionally disturbed, mentally ill, and developmentally disabled people, most of them not getting any of the kinds of attention they need to pull their lives together, if that’s even possible for a number of them. And, while some areas are pushing to see state run mental institutions shut down and their inhabitants placed in the community with supports, there is also a push by the unionized workers of many of these facilities to keep these places open just so they can secure their jobs at taxpayer expense, not because their patients couldn’t handle a community-based placement.? We’re just warehousing our “broken” people or otherwise subsidizing them to maintain meager, unproductive existences rather than investing in eliminating or decreasing their need for publicly funded services and benefits. The cost of special education is nothing compared to the costs of taking care of disabled adults who can’t take care of themselves. It is unconscionable to rob children of their futures in the first place. But it is also reprehensively unethical of the public sector to short-change the taxpayers by creating a bigger expense through failing to fund a smaller expense, particularly while asserting the argument that the smaller expense wasn’t funded because they were trying to save money. When it comes right down to it, in every dispute over services for children with disabilities that I’ve been involved in, money has been at the heart of the matter.? Part of the problem, and it’s high time we do something about it, is that while the federal government has committed to funding up to 40% of each local education agency’s special education programs, it has not lived up to even half that in all the time that the laws have been in place that provide for the funding. The other disturbing thing I see, though, is that some local education agencies will gladly throw over $700K at legal expenses to deny $23K worth of services. And, then they shriek because they don’t have any money. I would far rather see public education agencies committing their legal resources to securing the federal funds they’re due than fighting parents over services the schools are required by law to provide. I hope I’ve made a compelling point here that this is one of the many serious issues troubling our nation and it’s a costly problem to solve. But solve it we must! The consequences of failing to do so are becoming increasingly dire. Additional Reading Recommendation: Futurecast by Robert J. Shapiro.
Emotions Part 5 – Extended Family
The immediate family (parents and siblings) of a child with disabilities are generally the people we think are the most impacted by a child’s handicapping condition, aside from the child him- or herself. But, as with a pebble tossed into calm waters, there are ripples that travel outward in every direction, disturbing the calm of whoever is in their paths.
One of the challenges I’ve encountered as an advocate over the last 17+ years has been grandparents and other older extended family members who don’t understand or believe in learning disabilities. Largely, what has really been going on is very powerful denial. These elders don’t want to believe that such things exist because that could mean that the child could really have them and they don’t want to believe that, so they decide that the whole idea of learning disabilities is hogwash. I haven’t seen so much of this mentality lately. It was really prevalent in the late 1980s and early 1990s.
You have to bear in mind that, back in the day, no one knew about learning disabilities?or a whole lot of other disabilities that can compromise children’s success in school for that matter. If you looked okay, then you must be capable of achieving in school. Otherwise, you were just lazy.
Older folks sometimes limit their comprehension of what it means to have a disability to physically observable things, such as being in a wheelchair or having obvious physical attributes as with Down’s Syndrome. When told that their grandchild has ADHD, they might respond that he’s just undisciplined. When told that their grandchild has dyslexia, he just isn’t trying hard enough. What is often really going on beneath the surface is that they take labels like “learning disabled” and translate them to mean “retarded.”
Getting through to them that the disorders are in no way alike (and even if they are, so what?) depends on who they are as people. Some folks are just stubborn and aren’t going to hear anything you say. Others just need to be educated on the subject and are totally open to new information.
As with parents when they first find out that their child has a disability, extended family members can first go into a stage of denial. There has to be a mistake! Each person moves through the phases at their own rate. Some get stuck at a phase and never quite move out of it. Eventually, those who move through all the phases without getting stuck will arrive at acceptance and start to recognize the symptoms and behaviors that make it clear that the child does have some kind of disability. At that point, these extended family members are in a position to respond to the situation most appropriately.
Family feuds can erupt over a child with special needs. Disagreements can arise not over just whether or not the child is disabled, but what to do about it.? Some family members may say “Don’t make waves!” while others may say “Give ’em hell!” Some extended family members may choose to shun the child and his/her immediate family because they feel uncomfortable around the child with special needs, while others embrace the child with open arms.
Some extended family members will commit personal resources to addressing the child’s needs. I can’t tell you how many grandparents I’ve encountered who have personally financed private tutors and therapies and given hours and hours a week of their time shuttling their grandchildren with special needs to appointments and sessions. That goes for aunts, uncles, and close family friends, as well.
But, I’ve seen nuclear families pretty much going it alone, as well. Their extended families are not that close and don’t feel comfortable getting involved. This is particularly heartbreaking with single parent households where just the one parent is the only adult in the child’s life looking out to see that the child gets what he/she needs.
Extended family members who do get involved experience a wide variety of emotions. This is particularly the case with older extended family members who worry if the family will be able to collectively support the child’s needs, including covering the costs of things that should be, but have not been, provided by publicly funded agencies and programs.
Just babysitting for a child with severe autism, for example, can be exhausting. For older family members who may not be as healthy or physically fit as they once were, it is physically and emotionally draining to experience and witness just how much work is required to parent and educate a child with such demanding needs. For those with declining health, this can lead to a sense of powerlessness or even hopelessness, particularly if they are watching the younger, less-experienced-in-life parents of the child struggling to achieve appropriate services from the responsible agencies. Most often, the prevailing emotion on the part of these older family members is worry.
But, extended family isn’t limited to older family members. It also includes aunts, uncles, and cousins who collectively range in age from infancy to elderliness. For extended family members the same age as a child’s parents, these people are often raising families of their own and/or pursuing careers. Their plates are already full. They can easily become emotionally as well as physically unavailable to help out the parents of the child with disability. But, some families are stronger than others. I’ve seen the rallying together that can still happen in an extended family of the busiest people you can imagine. They can be very efficient in their division of the labor with everyone doing what they can in a way that creates a really solid support system.
All extended families are different, to be sure. Public education professionals need to pay a mindful eye to the type of support system a family has. While children with disabilities are entitled to a wide variety of services and supports, each child’s programming based on his/her unique needs, there is nothing that obligates a family to accept all that it is entitled to. I work with families who decline county mental health medication management services even though they were offered because they already have a prescribing psychiatrist who has been working with their child for years under their private insurance and don’t want to start over after all those years with someone new who doesn’t know their child. But, some nuclear families have little to no support from their extended families and are of limited means. They are, therefore, almost entirely dependent upon the public funded agencies and programs that exist to provide services to their children.
Public school personnel should never take it for granted that just because a family may seem able to privately finance services, that doesn’t mean that it actually can or will. I’ve gone into school districts in affluent neighborhoods where special education is spoken of by school personnel as though it is a welfare program for the poor and severely handicapped. Parents of children with learning disabilities and the like are told their children are not eligible for special education and parents are given a list of tutors they can hire at private expense to help their kids on the side, which they do. My problem with that is not that wealthy people are paying for tutors they can usually well afford, but that they were put in that position through deceit and manipulation by people collecting paychecks from the taxpaying public. When it comes to special education, a citizen is a citizen and the system is supposed to be there for everyone, regardless of socio-economic status.
When families are able to offer, knowing they don’t have to, to provide a portion of a child’s entitled program at private expense, the involved public agencies are usually pretty appreciative and will do all they can to fill in the remaining holes. It’s when public agencies mislead families into thinking that such services can only be obtained privately or simply refuse to pay for them regardless of what the families know of their rights, particularly when those families don’t have the resources to pay for them, that I’m in hot pursuit of reimbursement and/or the public funding of such programs.
It’s important for families to support each other as best as they can. For those of you who are parents of children with special needs, take some time to think about your own extended family and the type of support system you have and where it could be strengthened. The more emotionally healthy your family is, the better the support system in place for your child with special needs and you. The better your personal support system is, the more you are able to contend with any challenges you encounter along the way as you parent and advocate for your child.
Emotions Part 4 – Students
In the last three posts, I discussed the emotions of the adults involved in the IEP process, not because the adults are the most important, but because they are the most responsible. How the adults in the situation choose to behave and the decisions they make affect the course of the lives of each individual child who requires special education forever. And, I really mean forever.
No child is served by ignoring how the special education process directly impacts him or her. In fact, the impact that many of the decisions made by the adults in the IEP process have on children is required under the law to be measured. Measurable annual goals, as required by 34 CFR 300.320(2), look to determine whether the interventions and approaches decided upon and agreed to by the IEP team resulted in success. For the most part, the law is very student-centered.
Assessment can be a very grueling process for a child, particularly a young child. The nature of the suspected disabilities being assessed also plays a role in just how much standardized testing a child can tolerate in one sitting. Children with low motor tone can fatigue easily when being asked to perform paper/pencil tasks. Children with severe attention deficits can’t stay on task more than a few minutes at a time. Children with autistic spectrum disorders often have a hard time with the fact that the testing is not a normal part of their routine and the disruption to their predictable schedules can sometimes be enough to provoke non-compliant behaviors or tantrums, compromising the assessment process altogether.
By and large, children do not want to be disabled. The severity of the disability and the cognitive abilities of the child both impact the degree to which the child responds aversively to being “different” from his/her peers. Children with low cognition may not really comprehend just how different they are.They may come to terms with their circumstance rather quickly, regardless of whether they fully understand their situations or not.
I once worked as a job coach for developmentally disabled adults, providing supported employment services. One of my consumers was a fairly capable man who lived on his own in an apartment and had a full-time job working maintenance at a local driving range. He was very mildly cognitively impaired. He suspected that he had been brain injured in vitro during an incident of domestic violence, as his father regularly beat his mother throughout their marriage, including when she was pregnant. We were talking about life in general one day and he revealed this fact to me and the fact that he sometimes wondered what he would have been like if he hadn’t been disabled. He shrugged and summed things up by saying, in so many words, that he’d probably be living in his own place and working a full-time job, so really he didn’t think he had ended up in too different of a situation than where he would have otherwise ended up. I thought what he said was brilliant.
One of the attorneys I work with told me of a friend of his whose son was born with Down’s Syndrome. Intervention had been so successful for this young man that he lived independently, had a job, and easily accessed public transportation and all the entertainment and cultural enrichment opportunities that exist in the Los Angeles area. He could be frequently found taking the bus to work or some local attraction or point of interest. He was so confident in his abilities and proud of his own personal growth that he would tell people that he “used to be retarded,” judging himself against his own personal accomplishments more than anything else. What an example!
But, I’ve also worked with kids who started out with learning disabilities that went unserved for years only to develop serious emotional health problems after years of academic failure. These feelings of low self-esteem bled over into other aspects of their lives, undermining their friendships, family relationships, and responses to life in general.
A learning disability is quite unlike a cognitive impairment. People with learning disabilities have normal to above-average IQs. They just have a hard time processing certain types of information. A visual processing disorder means the person has a hard time making sense of what he/she sees. An auditory processing disorder means the person has a hard time making sense of what he/she hears. That has nothing to do with intelligence.
When perfectly intelligent children fail at something that other perfectly intelligent children can do without even thinking about it, it can make them feel bad about themselves. They often don’t want other people to know about their disabilities. They’re embarrassed by their shortcomings. Parental attitudes about these kinds of things can have a huge influence on how the kids respond. Parents who are more interested in “keeping up with the Joneses” rather than true quality of life are more likely to be ashamed of having a child with learning disabilities than parents who don’t. Parents who are constantly worried about what other people think can do a lifetime worth of harm to a child with a disability. But, I know many perfectly grounded parents who have made it perfectly clear to their kids that they love them no matter what and the rest of the world can go jump in a lake for all they care and their kids are still emotionally hung up over being “different.”
Age has a lot to do with this, too. Younger children are more forgiving and the younger kids are, the less they all know and the less children with disabilities (particularly “hidden” conditions like learning disabilities) appear to be different from their peers. But, as children get older, the expectations placed on them academically and in terms of social sophistication increase. The kids with disabilities will start to lag behind their peers in some ways and the gaps will start to widen. It doesn’t take long for kids to realize that this disparity is happening.
If the friendships formed in the early years have been nurtured and fostered into a healthy support system, the children with disabilities are more likely to continue to be accepted by their peers for who they are.? But, kids who end up moving away or who never really formed solid friendships in early childhood (which really speaks to the degree that the adults in their lives facilitated their friendships in a healthy way) can end up losing their friends as the differences become more apparent.
It is common for children with disabilities to feel like their lives are spiraling out of control. If the adults involved in their lives can’t achieve a collaborative energy amongst themselves and there are evident disputes amongst the adults about how the child’s needs can best be tended to, that feeling that life is in an out-of-control tailspin is greatly heightened. Children rely on the adults in their lives, particularly their parents, to be their rocks and foundations.
How issues are approached is vitally important. I absolutely hate going into situations where justifiably frustrated parents have hired attorneys to take their school districts to due process and the next day the kid goes to school and tells his/her teacher off, ending with “My parents are going to sue you!” That helps absolutely nothing.
Because the decisions adults make will change the course of a child’s life forever, when IEP teams are working together well, I believe it’s important for the children to sit in on at least a part of their own IEP meetings. As they get older, it’s important that they participate as members of their own IEP teams.
Parents have to be careful with this, though. If the purpose of the IEP meeting is to resolve disagreements about what should be in the IEP, it can be upsetting to children to be present during those discussions. It depends, though. I’ve seen various situations over the years where it was appropriate to have the kid there to settle the dispute once and for all while in other situations, kids had been reduced to tears or their parents held back on advocating for what they believed in because they didn’t want to upset their children (and, in the latter instance, that was the whole reason the school staff had insisted that the children participate).
Ultimately, the adults involved have to remember than an IEP is all about the child for whom it is being written. Not only do the adults have to respect each other, they have to respect the child and how their decisions will emotionally impact the child both in the short- and long-term. The child may have to do something he/she finds unpleasant in the beginning because it will lead to successes that will ultimately allow him/her to feel good about him-/herself. It’s up to the adults to make sure that the proper supports are in place so that the child’s initial aversion to the task does not undermine the overall goal, which means being attentive and properly responsive to the child’s emotions.
Emotions Part 2 – School Site Staff
Parents are not the only ones who have emotional reactions to things that happen in the special education process. Special education is a very complex undertaking that involves a lot of people, each with his/her own perspective.
Teachers and related service providers (speech-language specialists, occupational therapists, etc.), being in the trenches as it were, are the people most in a position to see the educational impact of a child’s special needs first-hand. What they don’t know can hurt a child.
Parents who jump to blaming teachers and providers without considering all of the factors that these professionals have to deal with, however, don’t help the situation. That isn’t to say that teachers and providers are without responsibility and shouldn’t be held accountable. But, things have to be done the right way.
There’s usually a whole lot more going on behind the scenes beyond the control of the teachers and related service providers that parents don’t know about or understand. Many parents may look at teaching and professional staff, as well as school site administrators, as having a lot of say in how things go down, but the truth is that their effectiveness is also influenced by internal agency politics that start at the top of the agency’s administrative hierarchy and trickle down into the classroom through bureaucratic channels.
What teachers and related service providers are prevented from doing by the internal politics of the agencies they work for can also hurt a child, and most teachers and providers who find themselves in these kinds of circumstances are sickened by them. I’ve spoken to many people over the years who left the teaching profession because they were unsupported by their administrations, were denied the tools they needed to teach all of their students (particularly those with unique learning needs), and were told not to say anything to parents or make waves lest they find themselves unemployed. This is entirely unacceptable on a variety of levels, not to mention unlawful.
In many of the difficult instances I’ve seen, teachers and related service providers have not been properly trained on what to do and/or have had critical resources withheld from them by the powers that be. When parents understand that teachers and service providers are usually jumping nervewracking hurdles within their agencies behind the scenes, a more constructive and collaborative way of working together can be developed and the professionals can come to regard the parents as resources rather than additional obstacles.
Teachers and related service providers, like parents, need to check their emotions at the door when it comes time for meetings with parents and co-workers. I once attended an IEP meeting for a little girl who was being raised by her single dad and the little girl’s teacher, as it turns out, had a mad crush on the dad. This same teacher was actually a pretty decent special education teacher in terms of her caring for her students and how effectively she communicated with them. But, the school district she worked for had trained its special education staff incorrectly on how to write IEP goals, resulting in IEPs filled with nonsensical gibberish.
The exasperated father kept going back to her asking for clarification, which she was more than willing to oblige, and calling new IEP meetings to better describe the goals without really getting anywhere productive. As a professional person, he knew what kind of standards he was held to when it came to goal-setting and he just couldn’t fathom his daughter’s IEP goals.
I wrote a letter to the district explaining why the goals were completely unacceptable and an IEP meeting was again called to address the goals. He and I went to the IEP meeting where this teacher, who had tried so hard to please this frustrated parent using the knowledge and information she had, bawled uncontrollably throughout the IEP meeting.
The teacher took the parent’s hiring of advocates to address the goals she had written as a personal attack, despite the fact that the real failing was in the way the district had trained her to write the goals and not something that we’d ever blamed her for specifically. Her sense of rejection was only further amplified by the fact that part of her motivation in working so hard with this parent was because she was attracted to him and, clearly, if he had hired a quasi-legal representative to respond to her efforts, her affections were not?being returned. It was one of the most uncomfortable IEP meetings I’ve ever attended.
That certainly doesn’t happen to me every day. But, I’ve gone to a number of meetings where teachers or service providers were defensive, rude, condescending, and inappropriate because they were bad people doing bad things. I went to a meeting once where a mean and nasty speech-language pathologist had produced a very poor assessment report on behalf of the district that failed to include any subtest scores, making it impossible to see whether the child had demonstrated subtest scatter (subtest scores that are not close together, indicating relative strengths in some areas and deficits in others, as opposed to the subtest scores more or less being about the same regardless of the areas tested). When I asked for the subtest scores, she sneeringly advised that she couldn’t provide them because she had shredded the assessment protocols (the booklets in which the student’s actual answers and scores are recorded). Shredded them!!!
In California, unlike many other states, assessment protocols are considered part of a student’s records and, therefore, must be maintained as such (meaning that parents have the right to copies of them). Here, the assessor had destroyed a protected student record and for what She couldn’t prove that she had properly administered and scored the assessments in addition to the fact that she couldn’t really show how the child had performed on them.
On behalf of the parents, I immediately disputed her results and asked for an independent educational evaluation (“IEE”), which is basically a second opinion by an outside assessor not employed by the education agency, at public expense.? The only way the district could have turned down the request would have been to take the family to hearing to assert the appropriateness of its assessments, which it couldn’t do because the speech-language pathologist had shredded the evidence. The district sensibly agreed to the IEE.
The thing I hope you take from this posting is that teachers and service providers are people too. Parents and administrators need to understand this but nonetheless expect the utmost ethical conduct from teachers and providers as well as a legitimate interest in learning whatever they can to make sure their students receive meaningful educational benefit.
Teachers and providers need to understand that protections are in place (see our first posting of November 11, 2008) to prevent them from being retaliated against by their employers for doing what they think is right by their students with disabilities. Administrators need to be sensitive to the feelings of pressure they may be inadvertently placing on teachers and providers to say and do things that betray their moral judgment. This is the kind of thing that leads to teacher burn-out and prompts service providers to leave public education and go into private practice.
Teachers and providers need to have confidence in their own voices and insist that they be provided with the training and supports they need to do their jobs well. Disenfranchisement is the usurper of success and depriving our children of success is an unacceptable outcome for us all.