Dr. Tiegerman Speaks

The Individuals with Disabilities Education Act (IDEA) which specifically states that a child with disabilities must be placed in an appropriate program based on his individual needs by a Special Education Committee in collaboration with his parent is being slowly and systematically undermined.  There is a major national crisis facing children with disabilities and their parents that is frightening in its scope and implications.  The work of decades by parents and advocates will be chipped away until IDEA becomes a meaningless law for children with disabilities.  And what does it all relate to?  CAPs. 

What is a CAP?  It is a quota.  The issue of CAPs does not relate just to children with disabilities.  If allowed to stand, CAPs will proliferate within and across states throughout the nation.  CAPs are dangerous and their impact on children with disabilities is emblematic of what will eventually happen to other social service programs.  CAPs exist in many states and in many different forms.  They provide the mechanism for governmental agencies to limit services.  The public needs to understand what happens when the government decides who will or will not receive services.  What is the origin of the CAP?

In New York State the Legislature in 1995 established a moratorium on the expansion of preschool education programs.  Since this population consists of very few children, it did not receive that much attention in the press or from the general public.  The New York State Education Department then took that preschool legislation and expanded it to include elementary, middle and high school special education programs without approval of New York Senate or Assembly.  Again, children with disabilities receiving services represent 7-8% of the population of children attending school, so their plight received very little attention in the press or from the general public.  But, the lack of objection to the concept of the CAP has sent a signal that its imposition could be generalized to other agencies. 

The danger to programs and services outside of education cannot be underestimated.  It is important to understand that the events in New York State over the past decade emphasize the immediacy of the issue to other states.  The legislation for preschool children sunset but the program CAPs were expanded and remain in place today.  One legislator when asked about the legality of the CAPs actually said, “There is nothing that can be done since CAPs are now the law.”  Let us recollect that racial laws were also in place for many years.  Does this statement mean that laws can be justified by their longevity?  With the imposition of the special education CAP, placement is based on program availability rather than on a child’s individual needs.  A special education committee cannot place a child in a program if its CAP has been reached even when it is appropriate.  In essence, all programs become the same with this service model, since if one is closed a parent can find another that is open.  But of course, we know that this is not true, all programs are not the same.  Programs serve different populations, they provide different services and they have different educational philosophies.  So, who cares?  Let us consider the following scenario.

Your father has a heart attack and you decide to take him by ambulance to hospital “A” which specializes in cardiac care.  The ambulance is turned away because that hospital has a CAP and you are told that the only other hospital that is open is hospital “B.”  This may, in fact, be a wonderful institution but it was not your choice, it does not specialize in cardiac care and it does not have the services that your father really needs given his individual problems.  The general issue that readers need to consider is the role of government and the level of interference in family decisions.  What right does a governmental agency that has never seen your father or someone else’s disabled child have to determine what services your family can receive?  I am certainly not saying that parents of children with disabilities can have unlimited choices.  I am saying that there is a system in place which has safeguarded the decision-making between professionals and parents.  This process has been replaced by someone in a governmental agency who has never seen the child and never read his evaluation reports but determines his placement based on a CAP. 

If we do not protect the rights of children with disabilities to receive services based on their individual needs without interference, influence and pressure from the state, then beware.  CAPs are going to proliferate across governmental agencies and to other states.  If left unchallenged by special education advocates in New York, there will be CAPs for social service and healthcare programs.  CAPs for programs serving infants, children, adults and the elderly.  CAPs for programs serving the homeless, the mentally ill, the addicted, the hospitalized, on and on.  Maybe you do not need any of these services – now.  Maybe no one in your family requires any of these services – now.  But be clear, that CAPs are creeping silently like weeds into governmental decision-making. 

Do you even know if CAPs are being used by state agencies in your state to limit educational and/or social service programs?  When a state agency has the ability to establish CAPs which are not based on children’s needs but rather on an arbitrary number or percentage, the Individuals with Disabilities Education Act is weakened.  If any of you remember the children’s story “Caps for Sale” by Esphyr Slobodkina, then you know that the monkeys in the story wearing the caps proliferated.  Let us hope that this call to action encourages advocates to be more proactive and the public to be more aware nationwide.  Otherwise, we will be the monkeys in the story living with the CAPs and a level of decision making that gives governmental agencies the ultimate control over who receives services in our families.

Ellenmorris Tiegerman, Ph.D.

                                                                                    Founder and Executive Director

                                                                                    School for Language and

                                                                                    Communication Development

There have been ongoing attacks on the special education system citing two major complaints – unreasonable parents and escalating costs.  In this article let’s address the issue of unreasonable parents.  Within the negative comments of parents who have children with disabilities, critics usually make the following kinds of statements: “Parents should be satisfied with comparable programs that are less expensive.  Parents are difficult to deal with and they threaten legal action.  Parents are demanding the best when their children are only entitled to what is appropriate.  Parents are demanding services when their children are not severe enough to warrant those services.”  The underlying implication is that children with disabilities really do not need special education services and that their aggressive parents are taking “resources” away from typical children.  To all of these critics I have the following questions:  Have any of you attended a Committee on Special Education meeting?  Have any of you read the psychological or educational reports generated by professionals on these children?  Have you visited special education programs and sat in to observe children during an instructional day?  The answer to all of these questions is probably no.  To write a fair, balanced and accurate article about parents of children with disabilities, you have to “walk the walk.” 

             Critics suggest that parents of children with disabilities are fighting for programs and services their children do not need or deserve.  Parents do not place their children – a committee is mandated to make that decision.  Do you think that the licensed professionals serving on Special Education Committees are going to lie or exaggerate test results to recommend services that are not appropriate?  Wow!  What evidence is there to this insidious accusation?  If anything, parents resist the placement of their children in special education.  Most parents are concerned about the stigma of the label following the child for the rest of his life.  What parent of a typical child would accept a label of mental retardation or autism so that her son could receive speech, occupational and/or physical therapy services?  You think so?  I have been involved with thousands of committee meetings involving parents, professionals and school districts.  There has never been a single instance of such a situation. 

So why are parents of children with disabilities in the news and on “the radar screen.”  Unlike parents of typical children, parents of children with disabilities often find themselves in an untenable position.  If they do not advocate for their child, no one else will.  It is a simple but frightening fact of life.  A child with a disability is going to need services for the rest of his life and the one constant advocate that he has is his parent.  Why would anyone be critical of a child advocate?  Would anyone be critical of advocates for the elderly or the mentally disabled?  Would anyone have the nerve to question the veracity or the motivation of any of these advocates?  The answer is no to all of these questions.  So why are parents of children with disabilities so maligned within the press?  The answer is that they cannot compromise about their children’s needs and some are prepared to take legal action.  These are the cases in the media and the press.  The vast majority of parents fight alone without advocacy support. 

Let us not forget one of the most famous advocates for a child with a disability – Annie Sullivan.  She sacrificed most of her life to teach Helen Keller.  The result was a remarkable student who led an extraordinarily gifted life.  But the struggle was at great personal sacrifice to Annie Sullivan, the teacher.  Parents are teachers and their children are worth the sacrifice and the fight.  We need to support and not criticize parents of children with disabilities because without them, children like Helen Keller would be where they were 100 years ago – in institutions.

Ellenmorris Tiegerman, Ph.D.

Founder and Executive Director

School for Language and

Communication Development 

There have been ongoing articles targeting the special education system with two major complaints:  escalating costs and unreasonable parents.  Let’s address these issues with the intent that an understanding of each will finally put to rest these vicious attacks.

            Since money is always a critical issue, let’s deal with it first.  When resources are limited and taxes are high, there is always a public ground swell that special education is “getting out of hand.”  Stop for a moment and think rationally about this statement.  Compared to what?  The only comparison that has been made historically is between the costs related to educating typical and special education children.  Obviously, children with disabilities need specialized services such as speech, occupational and physical therapies so programs will cost more.  The comparison between special and general education is specious particularly because children with disabilities (i.e., about 6 percent) represent such a small minority group within the general student population.  On average, public K-12 education programs receive 49 percent of their revenues from state government, 43 percent from local sources and 8 percent from the federal government.  So why blame children with disabilities for educational costs?  Because it’s easy.  Now consider a real comparison with supporting data that are rarely provided by the critics of special education.  Let’s compare the special education system to the prison system. 

            The Pew Center on the States, reported that in 2007, 62,620 people were placed behind bars in New York State.  Interestingly enough, the U.S. Department of Education, Office of Special Education Programs reported approximately the same number of children (ages 3-5 years) receiving services in special education – 60,156 children.  New York State spent over $2.6 billion in this fiscal year on correctional services.  New York State certainly did not spend anything close to $2.6 billion on either early intervention and/or preschool special education services.  The Bureau of Justice Statistics: Special Report on State Prison Expenditures indicated that New York State has one of the highest annual operating costs for inmates -$36,835.  In addition, the annual cost per inmate in New York City is $55,300 which is significantly higher than the cost of educating children with disabilities even with all of their related services and therapies.  The average tuition rate in early intervention is around $16,000 for an infant/toddler receiving special education services at home.  The average tuition rate in preschool for a child with a disability is around $35,000 for a full day special education program.  To clarify matters even further, did you know that 21 percent of the children in the United States who are under the age of 5 live in poverty?  New York State’s poverty rate at 14.4 percent is above the national average which is nothing to be proud of.  As a result, New York State ranks in the lowest quartile and its poverty rate is higher than all of the states in the New England, Mid-Atlantic and Mid-West Regions of the country. 

Finally, the incidence of learning disabilities among the general population is around 5% but in prison, the number of individuals with learning disabilities is estimated to be over 50%.  What does this tell us?  The Department’s goal is to be below the national average for children receiving special education services.  Children with disabilities are not “statistics” who will conveniently disappear.  Children who do not receive the educational services they need in preschool and elementary school are at greater risk for becoming dropouts and subsequently becoming involved in juvenile delinquency. 

            Certainly the investment in our children should be greater than the resources spent on our correctional system.  Are our children and their futures worth less than criminals who are receiving services in the New York State’s prison system?  Special education costs more than general education only because children need specialized services.  These are the services that critics are focused on?  If we have our priorities in the appropriate place special education does not cost too much.  The next time you read an article critical of special education costs send the writer an email about the correctional system.

Ellenmorris Tiegerman, Ph.D.

Founder and Executive Director

School for Language and

Communication Development 

What could he possibly be thinking?  There will obviously be a deluge of letters and op-ed pieces in local newspapers about the comments made concerning children with autism but I am concerned about what those comments really mean.  It is important for people to understand that children with autism have a diagnosed disorder so unless neurologists, psychologists, psychiatrists and speech language pathologists cannot differentiate between “brats” and children with disabilities, the comment shows a great deal of ignorance.  The process of diagnosis and identification is a complex one.  Educational teams within the school system require input from professionals and parents. Teams are also required to review multiple assessments so that diagnosis is not based on a single evaluation.  My question is, why would any parent want to diagnose her child with a developmental disability?  What would be the educational or emotional gain for a parent to have her child diagnosed with autism?  The very premise that a child with autism is “bratty” is ridiculous.

            It is important to know that most parents when they proceed through the process of early diagnosis fight with the reality of having a child with a disability.  To suggest that parents knowingly and willingly opt for the diagnosis of disability rather than recognizing the fact that their children are oppositional is far from the truth.  In all of my years of clinical experience, I have never met a family who either willingly or happily accepted the label of autism.  Parents grieve about the recognition and the reality of having a child with a disability.  Parents come to recognize that many of their dreams and expectations for their children are shattered with this diagnosis.  Every parent can understand how difficult this experience is and how painful the reality is for parents who have children with disabilities.

            Children with autism are not “withholding.”  They are not aware of the consequences of their behavior when they react with a great deal of anxiety to new situations.  Transitions from school to home, from home to the supermarket and from the supermarket to a restaurant can be very difficult for children and parents.  Often these transitions result in the child with autism having a temper tantrum because he is confused and anxious.  What do normal children do when they are confused and anxious?  They express their feelings!  Children do the best they can with the abilities that they have.

            To say that any child is a “brat” suggests either poor parenting or oppositional behavior in children.  Parents of children with disabilities work very hard to tailor their parenting skills to the needs of their children.  Children with autism are not deliberately or voluntarily or knowingly exhibiting “bratty” behavior.  It is not helpful for any media talk show host to make broad sweeping negative comments about any group of individuals, let alone children and especially children with disabilities.  They cannot argue back!

            Michael Savage needs to act responsibly and rather than just apologizing to the American public and particularly parents of children with autism, needs to discuss this issue with experts on his show.  Discussion within an open forum will provide listeners with a great deal of information about children with autism and the daily problems faced by their parents.  The child with a disability requires a lifelong commitment from parents.  Whereas parents of normal children have the luxury of “waving to them” when they go off to college or when they get married, parents of children with autism must follow and guide their children for as long as they live. 

                                                                                    Ellenmorris Tiegerman, Ph.D.

                                                                                    Founder and Executive Director

                                                                                    School for Language and

                                                                                    Communication Development

Finding out that a child has a disability is both overwhelming and frightening.  The initial diagnosis is the beginning of a long and difficult journey, but with the proper support system and appropriate knowledge in place, the journey will be more than manageable for parents.

Today, children with disabilities are usually diagnosed between the ages of birth and 3 years.  Below the age of 5 years there are two separate systems for infants/toddlers and preschoolers.  The family pediatrician can help parents find a service coordinator from the Department of Health to obtain evaluations and clinical services for children birth to 3 years.  The local public school district is responsible for helping parents with evaluations as well as appropriate educational programs for children 3 to 5 years.

In addition, local counties and school districts have a list of approved programs and providers for children with disabilities.  This list provides parents with the opportunity to access services at no cost to the family.  With this list in hand, parents can then look on the internet to determine if the programs and providers have websites which provide detailed information about their services, children served, application procedures and program history.  Parents can also call programs and providers to request a tour, a CD and or brochure. 

Since special education services have been in place for children with disabilities for many years, an internet search also provides parents with information about organizations which have been developed by parents for parents.  Local organizations provide parents of children with disabilities with lectures, and seminars.  The national organizations for parents are involved with policy issues affecting children with disabilities such as educational services, therapeutic services, clinical treatments and teacher certification.  For parents who are having difficulty understanding the educational system, Wright’s Law is a very popular site  for parents who have questions and/or concerns about parents’ and students’ rights. 

When parents visit different programs, they should be prepared with a list of questions such as: How long has the program been in existence?  What is the program’s philosophy?  What are the disabilities of students served with the program?  Does the program provide related services?  Are the teachers and therapists certified?

It is also important for parents to ask to visit a classroom.  Parents should feel comfortable about placing their child, particularly a young child within a new setting.  By seeing the inside of the building, the classroom and the other children, parents are able to determine if this would be a good place for their child.  If after visiting several programs in the immediate area parents do not find an appropriate program, parents should visit programs in other areas for comparison purposes.  Do not settle, your child is important.

I recommend that parents keep a diary of their experiences, thoughts and questions about the schools that they have visited and will visit in the future.  It is hard to remember specific information and/or personal impressions several weeks after a site visit has occurred.  In fact, parents should keep a diary throughout their children’s special education schooling.  This provides parents with an opportunity to look back and reflect on how far their children have progressed in the special education system.  Parents do a great deal of networking with one another.  Often the information that is chronicled within a diary may be helpful to another parent who is just beginning the exploration process of finding programs and services.  The best advice parents can follow is to make sure they investigate programs themselves and also talk to other parents. 

Ellenmorris Tiegerman, Ph.D.

                                                                                    Founder and Executive Director

                                                                                    School for Language and

                                                                                    Communication Development

As strange as it may seem, motherese is a technical term in the field of child language development.  For many years, mother’s role in the development of her child has been researched to determine its significance.  What have we learned about mother as a teacher?  We now know that a mother’s speech is sensitively related to what her child is doing and saying on a moment to moment basis.  Mother pays very close attention to what her child is looking at or playing with and then makes her speech simpler or more complex based on what he understands. 

From the time of infancy, mother is trying to get her child to respond.  Mother acts as a continuous listener as she interprets a broad range of infant behaviors as communicative.  It is very typical to see a mother talking to her infant and describing his actions when he sneezes, yawns or burps.  By acting as a listener, mother puts the baby in the role of a speaker.  For the infant to function as a speaker, he must learn when the conversational turn has been passed to him.  Mother teaches this by taking very long pauses between her utterances.  In addition, mother also greatly exaggerates her pitch, her gestures and her vowels which not only attract the infant but also keeps his attention.  She exaggerates the length of each word and speaks with extreme high and low pitch changes. 

It’s really very humorous to watch adults when they talk to babies.  Not only do they say things that the baby obviously does not understand (“Did you have a nice nap?” or “What did you do today?”) but their exaggerated speech just sounds ridiculous.  In fact, most adults will acknowledge that if they spoke to adults the way they speak to young children, they would sound awfully silly.  But everyone seems to know and do it anyway.  The adult rules are suspended when speaking to young language learners.  The child rules are:  Keep your speech short and simple.  Look at the child directly when you speak to him.  Do not assume that he understands what you are saying.  Talk about what he is playing with.  Look at what he is looking at.  If you want to know if he understands you – watch his actions.  Talk about the “here and now” not about yesterday or tomorrow.  Slowly add new information.  If your speech is too complex, you will lose his attention. 

As early as three months, mother and infant engage in a sequence of looking behaviors, sounds and gestures which later become the foundation for adult conversational speech.  So, mother -infant conversations are learning experiences.  Conversational exchanges during early childhood develop the framework for the most important aspect of human development – communication.  Mothers are wonderful teachers because they watch their infants.  They modify their speech style to encourage interaction.  They read their child’s behavior very carefully and they work very hard to get a response.  They stay focused on their child’s ability to understand and to interact. 

Research has shown that a mother’s speech is related to what her infant is doing approximately 68% of the time.  Just think about what that means.  Have you had a conversation lately with anyone who has paid attention to you 68% of the time – probably not.  So, mother’s language or motherese is instructionally very rich.  Mother is a natural language teacher who is greatly underrated and underappreciated!

Ellenmorris Tiegerman, Ph.D.

                                                                                    Founder and Executive Director

                                                                                    School for Language and

                                                                        Communication Development

For typical high school students, the choices about the future are numerous and exciting.  In stark contrast are students with disabilities who have fewer choices and more limited options.  For example, dropping out of school poses serious job-related problems for typical students.  Most businesses require and prefer to hire young adults with high school diplomas.  So, for students with disabilities dropping out of high school is a disaster.  Many students with disabilities do not graduate with a regular high school diploma.  They graduate with an IEP diploma (Individualized Educational Plan) which means that the general education course work which they have been exposed to has been modified to their level of understanding.  As a result, it is even more difficult for students with disabilities to find and to maintain jobs.

As a result of some changes to the education law, students with disabilities must now be provided with a formalized program referred to as Transition Programming which starts at age 14.  What is a transition program?  A transition program involves a coordinated set of activities which develops a student’s skills to increase the likelihood for independent living and self-sufficiency.  Some students with disabilities remain in educational programs until age 21 to receive these services.  Transition services include educational instruction, community experiences, employment development, vocational training, and the development of post-school adult living skills.  The transition from school to work and to community adult living can be very difficult for all students but particularly for students with disabilities.  Consider the difficulties related to getting to work: reading the bus or train schedule, traveling without getting lost, paying fares and having strategies to deal with getting lost. 

So starting in grade 7, transition planning becomes a continuous process that must include interviews with the student, his family and his teachers.  The beginning part of the process seeks to establish appropriate and realistic career goals by evaluating a student’s interests and skills.  It is important to note that transition planning can only be successful if teachers, parents and students work together to build a bridge to the outside community.  Schools providing these programs must create the linkages that establish the student’s interconnections to training programs, job sites, and social service agencies prior to graduation. 

This year at the School for Language and Communication Development, Dr. Jeremy Tiegerman, School Psychologist, Mrs. Lindsay Rich, School Psychologist, Mrs. Toya Davis, Parent Liason, and Mr. Robert Schmidt, School Principal scheduled a Career Day and Job Fair for the Middle/High school students in Woodside, Queens.  The Job Fair took months of planning and preparation to organize.  Community businesses had to be contacted and encouraged to participate.  The students learned about the community’s diverse employment opportunities.  Professionals representing different sectors within the business community spoke to students about job requirements and answered many questions about work schedules and salaries.  These early contacts with business leaders hopefully will create the core of job opportunities for students when they leave the program.  The Job Fair also provided business professionals with the opportunity to meet students and visit the school.

We all want independence and self-sufficiency for our children.  We all want our children to reach their potential in order to live a fulfilling life.  For students with disabilities, the process takes longer and requires educational as well as community supports.  Businesses need to consider ways in which minor work-setting changes which could create an internship experience for a high school student with a disability.  The more business and community leaders who open their hearts and their work settings to students with disabilities, the greater the probability that job success will be achieved.  Students with disabilities can become a productive part of our vibrant society.  For some of our children, we need to be more creative about the process.  Everyone can contribute to the success of American business. 

Ellenmorris Tiegerman, Ph.D.

Founder and Executive Director

School for Language and

Communication Development 

I cannot imagine what people are thinking when they make insensitive comments about children with autism and their parents.  It really isn’t funny and to use children to make a joke is at the very least cruel.  So for all comedians out there, I would suggest that you wash out your mouths and go back to the Golden Rule, “If you can’t say anything nice, don’t say anything at all.” 

Stop labeling children and their parents with nasty, negative terms.  Parents are not “junior morons,” they are struggling like most parents with children who do not come out of a cookie cutter design.  No one chooses to have a child with a disability.  It is hard.  It is difficult.  It is a life-long commitment that tears at our insides and our souls as we watch our children struggle.  These jokes and snide remarks are hurtful and mean because they are belittling.

Firstly, parents are not “faking” their children’s problems.  Children with autism spectrum disorders have serious and severe communication, language and behavioral disorders which are diagnosed by psychologists, neurologists and speech pathologists between 18 and 24 months of age.  So, parents are not making anything up and they are certainly not exaggerating the fact that their children have serious developmental disabilities.  There is no conspiracy between parents and professionals to identify learning problems that are not real.  Secondly, for the life of me, I cannot understand why parents are being blamed for their children’s learning difficulties.  Children do not have autism because adults have poor parenting skills.  How can anyone suggest that parents are to be blamed for their children’s neurological difficulties?  Parents do the very best that they can when they raise their children.  There is no learning manual which teaches parents how to parent.  This is truly a learn as we go process and certainly as parents we learn a great deal about ourselves from our children.  But let’s understand something, parents do not deliberately and/or intentionally raise their children to become socially, emotionally and/or behaviorally disordered.  The blame game which makes parents the focus of mean-spirited comments is destructive to all families. 

Most parents do not have children with disabilities.  Most parents have the typical and usual developmental problems that we all talk about humorously as children get older.  For example, the historical comment made by many mothers, “You should only have a child like you.”  I think any parent of a child with a disability would love to make that statement.  The statement reflects the fact that typical children as challenging as they may be, grow up and grow out of the universal adolescent challenges.  For parents of children with disabilities, particularly those with autism spectrum disorders, the challenges remain part of the child’s adult profile and never disappear. 

My question to Denis Leary is what is your motivation for making remarks like this?  Why would you make jokes at someone else’s expense?  So how about if I say to Denis Leary, “Come here and let me slap you” for being such a nasty little boy.  What would your mother say? 

Ellenmorris Tiegerman, Ph.D.

                                                                                    Founder and Executive Director

                                                                                    School for Language and

                                                                                    Communication Development