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Melody Arons Center Logo
Melody Notes
Vol.1, No. 2
January 2002
Vol.1, No. 2
January 2002
Contents
January 7, 2002
Today is Melody’s birthday. She would be 34 years old. This Center is intended to bring together the conceptual threads that wove the tapestry of her life. At her core she was happy and fun-loving, few able to keep up with her on any given day. Our journey together was unconventional. I wasn’t willing to follow the neurologist’s suggestion-“Take her home and love her. There is nothing else you can do. Later on you’ll want to think about institutionalization.” I was a single parent and there were so many problems. We were without money and resources. All we had was the power of our will, our minds, and each other. She was determined to live, and I was determined to help her. Years of reading, studying, trying therapies and programs old and new. But Melody would not let you forget that she was a person, a soul, who was at the center of the work, worry and sleepless nights. Maturing together, we were each others’ teachers. The search for information was relentless. Ray entered our lives as husband and father. By trial and error, we learned to use science and the law to solder pieces together that had never been connected before. Melody used those pieces, driving independently into adulthood with pizzazz, a toss of her hair, competence, and absolute confidence that she would succeed. She did until the day she died.
It would be so easy to stop now and say-“It’s enough.” People tell us, “She is gone and it’s OK to rest.” No. I don’t think so. There are many reasons we will do whatever is needed to build and sustain this Center. Being Melody’s mother is reason enough.
Marilyn Arons, President & CEO
HULABALLOO HOLIDAY CONCERT
MAC thanks Linsy Farris, M.D., bass, Charles Culbreath, D.D.S., saxophone, and Jonathan Arons, trombone, for joining Ray and Marilyn Arons in a holiday concert on December 29, 2001. Two fundraising concerts will be held during April and May 2002.
Top
MAC News
IDEA Reauthorization
On December 6, 2001, MAC members testified in Washington, D.C. concerning issues relating to the reauthorization of the Individuals With Disabilities Education Act. Members from New Jersey, Pennsylvania and Delaware presented information and experiences about the need to recognize the need for nonlawyer practice in special education hearings. They were supported by HALT, An Organization of Americans for Legal Reform, who also presented a position paper and testimony. This public hearing was before a panel consisting of representatives from the Office of Special Education Programs (OSEP) and Robert Pasternack, a member of the Commission on Excellence in Special Education, appointed on October 2, 2001 by President Bush. Approximately 200 people attended.
A copy of the position paper submitted by Marilyn Arons, President & CEO, is available for $2.00.
Sand Antonio, Texas Input
On December 19, 2001, MAC presented written input to the final IDEA reauthorization hearing in San Antonio, Texas. A case study was offered on obtaining early intervention services in New Jersey, an example of the profound systemic flaws within the current status of service delivery and intervention to disabled infants, toddlers and their families. Ravinder N. Bhalla, M.D., Trustee and Board Certified child psychiatrist, shared his personal experiences in working with children and families involved with early intervention. The case study and Dr. Bhalla’s statement follows in this newsletter.
Hulabaloo
MAC held its first holiday party on December 29, 2001 at the home of Ray and Marilyn Arons. A chamber music setting provided the environment for an evening of holiday music. Musicians included Ray, Marilyn and Jonathan Arons, Linsy Farris, M.D., and Charles “Charlie” Culbreath, D.D.S. MAC is particularly grateful to Dr. Culbreath who flew in from North Carolina to perform in this concert. Pictures appearing on the cover of this newsletter were provided by Neil Lombardi, M.D.
MAC at PLI Institute
On January 8, 2002, the Practicing Law Institute featured the work of Marilyn Arons at its Conference Center in New York City. Over 200 judges, lawyers, advocates and educators attended. The evolution of nonlawyer practice was presented, as well as its implications for the future of children with special needs. Emphasis was placed on Child Find and children ages 0-5. Copies of those materials can be obtained for $4 from the MAC.
Fund Raiser Concerts
MAC plans a series of fund-raising concerts during April, May and June 2002. The money raised from those concerts will go into the building fund, so that the Center is able to offer increased services to more families.
Top
Case Study
Marilyn Arons
This case study was presented to OSEP (Office of Special Education Programs) on December 19, 2001 regarding Part C issues to be considered in the IDEA reauthorization.
…And All That Jhazz
“Marilyn, my friend has a little baby that needs help. I’m afraid for them. Will you see her?” It was early August. My colleague and I had just finished some coursework together, so that she knew of what we have come to call “Melody’s Mission”. (Any time-anywhere. If we can help, we’ll be there.) “I’ve been staying at her house with the baby some days so that she can get some sleep. They’ve cut off her home nursing services and she’s desperate. What can we do?” We decided to meet each other at the mother’s home the next day.
His name was Jhazz- an eight month old baby weighing eight pounds. Breathing tubes, a heart monitor, scars across his tiny body, a mini-hospital in the living room. He had smooth sienna skin, a perfect miniature head, and bright black eyes. Thick, dark curly hair framed his face. He was sucking some breast milk from a bottle before going to the doctor for a check-up. “He’s my angel baby, a gift from God. He’s going to be O.K”, his mother said. “Thank you for coming.” She was in her early twenties, intelligent, pretty, and exhausted. The house was immaculate. For the last ten days she had been up 22 hours a day in order to care for Jhazz. The father was a salesman whose job took him away from home for long periods.
Insurance would no longer pay for the private duty nursing care that Jhazz required. No one could explain why the insurer said that he was no longer at medical risk. I took a history and asked if the mother had been given any information about early intervention. “What is early intervention?” No one had told her how to enter the 0-2 Part C system of IDEA or what is was. “They sent him home to die. They sent him home to die! How could they not tell me about this?”
Jhazz was born in Illinois at 26 weeks gestation. His parents were there from New Jersey to visit friends for Thanksgiving. He weighed 1.5 pounds. At four days old, his left lung collapsed and a chest tube was put in. By seven days old his kidneys began to shut down, and he got a staph infection. He was on dialysis for the next month. His mother did not hold him until he was two months old, her breast milk pumped to feed him.
During his third week on dialysis, he required immediate heart surgery. He was resuscitated four times over several days. Because of the heart problems, he developed abnormal blood vessels in his eyes. Surgery for that was successful. Next came a hernia repair. He was on a respirator for the next four months. Finally stable, he was flown home to New Jersey and taken directly to St. Joseph’s hospital. He was there for two months and then discharged. His parents were given no information about any kind of publicly funded services or support.
The parents believed that their only funding source was Aetna insurance carried by the father. Upon release from the hospital, Aetna paid for five days a week of home private duty nursing for Jhazz at $45 per hour. At the end of 30 days, Aetna terminated the nursing care. No amount of outrage from the doctor, the parents or the home nursing agency could change this decision. The mother was afraid that she would fall asleep, now that she was on call 24 hours a day, performing all of the nursing shifts alone. There was no extended family or back-up system except the young woman who had called me. This mother believed that her son would die if she fell asleep and that her only hope was to stay awake as long as she could in case a light or a buzzer went off.
Funding for Services
I made 18 telephone calls for Jhazz in the next 36 hours. These included conversations with the Division of Developmental Disabilities, the Department of Health and Senior Services, the Bergen County Health Department, the New Jersey Department of Education, the Bergen County Office of Education, two private-duty nursing agencies and four case workers from Aetna. Jhazz had fallen through the cracks of every agency that was to be his safety net. It appeared that his mother was right. He had been sent home to die, so no one took the time or trouble to forward his case to the appropriate public agency.
Everyone I called attempted to pass the buck. Call here. Call there. This is not the proper procedure. There is no such thing as an emergency. There is a waiting list of children to be evaluated so he’ll have to wait. Aetna was the most interesting. I spoke with a person in the billing department first. She explained the “encounters”, the charges submitted and the payments made. These did not match the information and documentation provided to me by the mother. Jhazz’s file, Aetna said, showed nothing to support the requirement for skilled nursing care. I was told to consult their website to better understand the criteria for private duty nursing. I asked how this would be handled if the parent did not have a computer or could not read. That was thought to be highly unlikely. Incredibly, Aetna had a Part C social worker with whom I spoke at length. Though the parents had told others in the company about their desperation, this social worker had never heard of Jhazz. His job was to refer parents to their Part C provider.
Using New Jersey as an analog, the amount of agencies involved in early intervention is staggering. It is treated like a secret agency, with secret services, and no one puts the pieces together for families. In Jhazz’s case, the following agencies or organizations were contacted:
The current interagency collaboration in early intervention is an abysmal failure. The interagency coordinating councils have neither solved the profound funding issues nor resolved the turf battles that continue to prevent an adequate funding stream. Parents have no understanding of the system because the system does not understand itself. Parents of disabled infants and toddlers have no effective entry point into the child find provisions of Part C. Both parents and professionals are caught in a growing bureaucratic maze that prevents the delivery of essential services to children and families. This is especially true for those in urban areas, as well as for those from other countries, cultures and languages.
The intensity of services needed for a significant portion of the infant and toddler population does not currently exist. At this most critical stage of human development when there is, quite literally, the biggest bang for the buck, intensive services are considered to be twice a week at most. Five day a week programs with an integrated delivery system of related services does not exist though it is desperately needed.
Part C is the epitome of a transdiscplinary model of service delivery. It simultaneously combines medicine with education and family training. All are needed in equal parts as demonstrated by the emerging knowledge about human genetics and the disappearance of the boundaries between nature and nurture. Greater funding is needed as well as more efficiency. Focus must be placed with greater urgency upon the intensity and coordination of services needed by the Part C population, and less upon the bureaucratic layers that prevent access to these services. Reform must occur that involves physicians and the entire medical community. They need to know about and refer children and families in need of services as soon as a potential disability is suspected.
Return to the former HEW model of the Health, Education and Welfare is needed. That provided the bedrock of P.L. 94-142 in 1975, and is strongly recommended again for the upcoming IDEA reauthorization, particularly Part C. A genuine blend of HEW funding and multidisciplinary expertise is now missing in the nation’s early intervention system. It is not “user friendly”, and presents an abyss between medicine, education and family welfare to the detriment of the very children Part C was intended to serve.
Attached please find the input from one of our Trustees, Ravinder N. Bhalla, M.D. Dr. Bhalla is a board certified child psychiatrist with extensive experience and expertise in working with children and families, particularly in urban areas. We hope that you find his thoughts and experiences to be of insight and value as you consider the reauthorization of IDEA. This must include a drastic reform of its Part C provisions in both funding, structure, and parent involvement and training.
Top
I Will Talk to You as Their Collective Voice
Ravinder N. Bhalla, M.D.
I wish Happy Holidays to all of you honorable people. I work as a Child and Adolescent Psychiatrist for the last ten years in the service of disabled children. I am also the parent of a disabled child. I feel adequately qualified to be the representative of those parents and children. I would like to talk to you today as their collective voice. We, the disabled children of New Jersey and this nation, want to tell you a few facts about us at the outset. Perhaps the answers to the individual questions posed to the public by this panel will be answered in the process.
We are all your children. We are all children on a continuum of different internal and external hardships, striving to do better in life. We look up to you, the adults, and we look to each other for support, guidance, and interventions. Our parents feel more responsibility for us than all of you collectively. They do so much with courage and are alone many times under great adversities imposed by our disabilities. In your present generation you may be blessed with children with fewer challenges, while other families face greater challenges in their present generation. If you look at your family tree for a few generations, you will realize that we are placed and distributed among all of you. We bring challenges of a different magnitude to you. Without these challenges, life would be meaningless for all of us. Without us, humanity will cease to exist because we are your future after you are gone.
We thank you for your efforts and appreciate any help we may get. But you are not meeting our needs. We recommend most humbly the following:
Each school district in America needs to have the most qualified individuals in the various areas of educational disabilities on their staff. Diagnosis and educational planning have to be more specific and individualized. For example, in the way that a cardiologist is better able to deal with heart problems than a general practitioner or urologist, teachers of autistic children must have expertise in the field of autism. Educators also need on-going supervision and hands-on experiences, support and continuing education. Each district needs experts in various fields of disability and strong affiliations with institutes, universities and hospitals dealing with these disabilities. Bureaucratic concerns that cause hurdles in getting this expertise must be dealt with gently but sternly.
More incentives need to be given to do research in special education. More universities need encouragement to offer advanced courses, and students need incentives to take them. Both would result in graduates with greater expertise in specific areas of education.
School systems need to be user-friendly, proactive, innovative and accountable. Their actions and programs must be based on good practices that are based upon available science and outcome-based measurement. There must be curiosity to do new research that is consumer (student and family) oriented and sensitive. Legal remedies now available to parents are extremely stressful, expensive and slow. They are ineffective even when some families can afford them. As I see it, the current system of public education is akin to the field of medicine forty years ago. Educational techniques that are used do not address the individual, cultural and ethnic diversity of students, even if they are in mainstream education.
There has been little progress in implementing the IDEA since the last reauthorization. I point out that the cause of special education and general education is no less a war than our country is now waging against terrorism. In the special education war, victory can be guaranteed because we know who the enemies are. The problems are obvious. I believe that IDEA will have made major achievements when every high school student has some knowledge of early childhood development and the role of early intervention services; when students in middle schools understand that their peers learn in different ways; when disabled students will be accepted as respected members of school by students without disabilities. Without more serious effort and adequate concern of government, educational funds will continue to be wasted in halfhearted efforts. I pray that we find enough love and resolve in our hearts to take up this challenge whole-heartedly.
Top
* Melody's BirthdayMelody's Birthday
* MAC News
IDEA Reauthorization
* Case Study - Jhazz
* I Will Talk to You as Their Collective Voice
January 7, 2002
Today is Melody’s birthday. She would be 34 years old. This Center is intended to bring together the conceptual threads that wove the tapestry of her life. At her core she was happy and fun-loving, few able to keep up with her on any given day. Our journey together was unconventional. I wasn’t willing to follow the neurologist’s suggestion-“Take her home and love her. There is nothing else you can do. Later on you’ll want to think about institutionalization.” I was a single parent and there were so many problems. We were without money and resources. All we had was the power of our will, our minds, and each other. She was determined to live, and I was determined to help her. Years of reading, studying, trying therapies and programs old and new. But Melody would not let you forget that she was a person, a soul, who was at the center of the work, worry and sleepless nights. Maturing together, we were each others’ teachers. The search for information was relentless. Ray entered our lives as husband and father. By trial and error, we learned to use science and the law to solder pieces together that had never been connected before. Melody used those pieces, driving independently into adulthood with pizzazz, a toss of her hair, competence, and absolute confidence that she would succeed. She did until the day she died.
It would be so easy to stop now and say-“It’s enough.” People tell us, “She is gone and it’s OK to rest.” No. I don’t think so. There are many reasons we will do whatever is needed to build and sustain this Center. Being Melody’s mother is reason enough.
Marilyn Arons, President & CEO
HULABALLOO HOLIDAY CONCERT
MAC thanks Linsy Farris, M.D., bass, Charles Culbreath, D.D.S., saxophone, and Jonathan Arons, trombone, for joining Ray and Marilyn Arons in a holiday concert on December 29, 2001. Two fundraising concerts will be held during April and May 2002.
 |
Top
MAC News
IDEA Reauthorization
On December 6, 2001, MAC members testified in Washington, D.C. concerning issues relating to the reauthorization of the Individuals With Disabilities Education Act. Members from New Jersey, Pennsylvania and Delaware presented information and experiences about the need to recognize the need for nonlawyer practice in special education hearings. They were supported by HALT, An Organization of Americans for Legal Reform, who also presented a position paper and testimony. This public hearing was before a panel consisting of representatives from the Office of Special Education Programs (OSEP) and Robert Pasternack, a member of the Commission on Excellence in Special Education, appointed on October 2, 2001 by President Bush. Approximately 200 people attended.
A copy of the position paper submitted by Marilyn Arons, President & CEO, is available for $2.00.
Sand Antonio, Texas Input
On December 19, 2001, MAC presented written input to the final IDEA reauthorization hearing in San Antonio, Texas. A case study was offered on obtaining early intervention services in New Jersey, an example of the profound systemic flaws within the current status of service delivery and intervention to disabled infants, toddlers and their families. Ravinder N. Bhalla, M.D., Trustee and Board Certified child psychiatrist, shared his personal experiences in working with children and families involved with early intervention. The case study and Dr. Bhalla’s statement follows in this newsletter.
Hulabaloo
MAC held its first holiday party on December 29, 2001 at the home of Ray and Marilyn Arons. A chamber music setting provided the environment for an evening of holiday music. Musicians included Ray, Marilyn and Jonathan Arons, Linsy Farris, M.D., and Charles “Charlie” Culbreath, D.D.S. MAC is particularly grateful to Dr. Culbreath who flew in from North Carolina to perform in this concert. Pictures appearing on the cover of this newsletter were provided by Neil Lombardi, M.D.
MAC at PLI Institute
On January 8, 2002, the Practicing Law Institute featured the work of Marilyn Arons at its Conference Center in New York City. Over 200 judges, lawyers, advocates and educators attended. The evolution of nonlawyer practice was presented, as well as its implications for the future of children with special needs. Emphasis was placed on Child Find and children ages 0-5. Copies of those materials can be obtained for $4 from the MAC.
Fund Raiser Concerts
MAC plans a series of fund-raising concerts during April, May and June 2002. The money raised from those concerts will go into the building fund, so that the Center is able to offer increased services to more families.
Top
Case Study
Marilyn Arons
This case study was presented to OSEP (Office of Special Education Programs) on December 19, 2001 regarding Part C issues to be considered in the IDEA reauthorization.
…And All That Jhazz
“Marilyn, my friend has a little baby that needs help. I’m afraid for them. Will you see her?” It was early August. My colleague and I had just finished some coursework together, so that she knew of what we have come to call “Melody’s Mission”. (Any time-anywhere. If we can help, we’ll be there.) “I’ve been staying at her house with the baby some days so that she can get some sleep. They’ve cut off her home nursing services and she’s desperate. What can we do?” We decided to meet each other at the mother’s home the next day.
His name was Jhazz- an eight month old baby weighing eight pounds. Breathing tubes, a heart monitor, scars across his tiny body, a mini-hospital in the living room. He had smooth sienna skin, a perfect miniature head, and bright black eyes. Thick, dark curly hair framed his face. He was sucking some breast milk from a bottle before going to the doctor for a check-up. “He’s my angel baby, a gift from God. He’s going to be O.K”, his mother said. “Thank you for coming.” She was in her early twenties, intelligent, pretty, and exhausted. The house was immaculate. For the last ten days she had been up 22 hours a day in order to care for Jhazz. The father was a salesman whose job took him away from home for long periods.
Insurance would no longer pay for the private duty nursing care that Jhazz required. No one could explain why the insurer said that he was no longer at medical risk. I took a history and asked if the mother had been given any information about early intervention. “What is early intervention?” No one had told her how to enter the 0-2 Part C system of IDEA or what is was. “They sent him home to die. They sent him home to die! How could they not tell me about this?”
Jhazz was born in Illinois at 26 weeks gestation. His parents were there from New Jersey to visit friends for Thanksgiving. He weighed 1.5 pounds. At four days old, his left lung collapsed and a chest tube was put in. By seven days old his kidneys began to shut down, and he got a staph infection. He was on dialysis for the next month. His mother did not hold him until he was two months old, her breast milk pumped to feed him.
During his third week on dialysis, he required immediate heart surgery. He was resuscitated four times over several days. Because of the heart problems, he developed abnormal blood vessels in his eyes. Surgery for that was successful. Next came a hernia repair. He was on a respirator for the next four months. Finally stable, he was flown home to New Jersey and taken directly to St. Joseph’s hospital. He was there for two months and then discharged. His parents were given no information about any kind of publicly funded services or support.
The parents believed that their only funding source was Aetna insurance carried by the father. Upon release from the hospital, Aetna paid for five days a week of home private duty nursing for Jhazz at $45 per hour. At the end of 30 days, Aetna terminated the nursing care. No amount of outrage from the doctor, the parents or the home nursing agency could change this decision. The mother was afraid that she would fall asleep, now that she was on call 24 hours a day, performing all of the nursing shifts alone. There was no extended family or back-up system except the young woman who had called me. This mother believed that her son would die if she fell asleep and that her only hope was to stay awake as long as she could in case a light or a buzzer went off.
Funding for Services
I made 18 telephone calls for Jhazz in the next 36 hours. These included conversations with the Division of Developmental Disabilities, the Department of Health and Senior Services, the Bergen County Health Department, the New Jersey Department of Education, the Bergen County Office of Education, two private-duty nursing agencies and four case workers from Aetna. Jhazz had fallen through the cracks of every agency that was to be his safety net. It appeared that his mother was right. He had been sent home to die, so no one took the time or trouble to forward his case to the appropriate public agency.
Everyone I called attempted to pass the buck. Call here. Call there. This is not the proper procedure. There is no such thing as an emergency. There is a waiting list of children to be evaluated so he’ll have to wait. Aetna was the most interesting. I spoke with a person in the billing department first. She explained the “encounters”, the charges submitted and the payments made. These did not match the information and documentation provided to me by the mother. Jhazz’s file, Aetna said, showed nothing to support the requirement for skilled nursing care. I was told to consult their website to better understand the criteria for private duty nursing. I asked how this would be handled if the parent did not have a computer or could not read. That was thought to be highly unlikely. Incredibly, Aetna had a Part C social worker with whom I spoke at length. Though the parents had told others in the company about their desperation, this social worker had never heard of Jhazz. His job was to refer parents to their Part C provider.
Using New Jersey as an analog, the amount of agencies involved in early intervention is staggering. It is treated like a secret agency, with secret services, and no one puts the pieces together for families. In Jhazz’s case, the following agencies or organizations were contacted:
MedicaidSummary
N.J. Kid Care
Catastrophic Child Fund
Early Intervention
Division of Developmental Disabilities
Department of Health and Senior Services
Bergen County Office of Education
Bergen County Early Intervention Coordinator
The current interagency collaboration in early intervention is an abysmal failure. The interagency coordinating councils have neither solved the profound funding issues nor resolved the turf battles that continue to prevent an adequate funding stream. Parents have no understanding of the system because the system does not understand itself. Parents of disabled infants and toddlers have no effective entry point into the child find provisions of Part C. Both parents and professionals are caught in a growing bureaucratic maze that prevents the delivery of essential services to children and families. This is especially true for those in urban areas, as well as for those from other countries, cultures and languages.
The intensity of services needed for a significant portion of the infant and toddler population does not currently exist. At this most critical stage of human development when there is, quite literally, the biggest bang for the buck, intensive services are considered to be twice a week at most. Five day a week programs with an integrated delivery system of related services does not exist though it is desperately needed.
Part C is the epitome of a transdiscplinary model of service delivery. It simultaneously combines medicine with education and family training. All are needed in equal parts as demonstrated by the emerging knowledge about human genetics and the disappearance of the boundaries between nature and nurture. Greater funding is needed as well as more efficiency. Focus must be placed with greater urgency upon the intensity and coordination of services needed by the Part C population, and less upon the bureaucratic layers that prevent access to these services. Reform must occur that involves physicians and the entire medical community. They need to know about and refer children and families in need of services as soon as a potential disability is suspected.
Return to the former HEW model of the Health, Education and Welfare is needed. That provided the bedrock of P.L. 94-142 in 1975, and is strongly recommended again for the upcoming IDEA reauthorization, particularly Part C. A genuine blend of HEW funding and multidisciplinary expertise is now missing in the nation’s early intervention system. It is not “user friendly”, and presents an abyss between medicine, education and family welfare to the detriment of the very children Part C was intended to serve.
Attached please find the input from one of our Trustees, Ravinder N. Bhalla, M.D. Dr. Bhalla is a board certified child psychiatrist with extensive experience and expertise in working with children and families, particularly in urban areas. We hope that you find his thoughts and experiences to be of insight and value as you consider the reauthorization of IDEA. This must include a drastic reform of its Part C provisions in both funding, structure, and parent involvement and training.
Top
I Will Talk to You as Their Collective Voice
Ravinder N. Bhalla, M.D.
I wish Happy Holidays to all of you honorable people. I work as a Child and Adolescent Psychiatrist for the last ten years in the service of disabled children. I am also the parent of a disabled child. I feel adequately qualified to be the representative of those parents and children. I would like to talk to you today as their collective voice. We, the disabled children of New Jersey and this nation, want to tell you a few facts about us at the outset. Perhaps the answers to the individual questions posed to the public by this panel will be answered in the process.
We are all your children. We are all children on a continuum of different internal and external hardships, striving to do better in life. We look up to you, the adults, and we look to each other for support, guidance, and interventions. Our parents feel more responsibility for us than all of you collectively. They do so much with courage and are alone many times under great adversities imposed by our disabilities. In your present generation you may be blessed with children with fewer challenges, while other families face greater challenges in their present generation. If you look at your family tree for a few generations, you will realize that we are placed and distributed among all of you. We bring challenges of a different magnitude to you. Without these challenges, life would be meaningless for all of us. Without us, humanity will cease to exist because we are your future after you are gone.
We thank you for your efforts and appreciate any help we may get. But you are not meeting our needs. We recommend most humbly the following:
- Think of us as yours even if we are not born to you.
- Respect and learn our challenges as much as you can to help us succeed.
- Tell everyone about us and our challenges. Our challenges are the greatest ones to humanity and with the greatest rewards.
- Know that our challenges are enormous. They need to be dealt with with greater effort and seriousness.
- Our challenges are those that restrict us the most. Your caring, innovations, and specific educational interventions are the ones that will give us more freedom.
Each school district in America needs to have the most qualified individuals in the various areas of educational disabilities on their staff. Diagnosis and educational planning have to be more specific and individualized. For example, in the way that a cardiologist is better able to deal with heart problems than a general practitioner or urologist, teachers of autistic children must have expertise in the field of autism. Educators also need on-going supervision and hands-on experiences, support and continuing education. Each district needs experts in various fields of disability and strong affiliations with institutes, universities and hospitals dealing with these disabilities. Bureaucratic concerns that cause hurdles in getting this expertise must be dealt with gently but sternly.
More incentives need to be given to do research in special education. More universities need encouragement to offer advanced courses, and students need incentives to take them. Both would result in graduates with greater expertise in specific areas of education.
School systems need to be user-friendly, proactive, innovative and accountable. Their actions and programs must be based on good practices that are based upon available science and outcome-based measurement. There must be curiosity to do new research that is consumer (student and family) oriented and sensitive. Legal remedies now available to parents are extremely stressful, expensive and slow. They are ineffective even when some families can afford them. As I see it, the current system of public education is akin to the field of medicine forty years ago. Educational techniques that are used do not address the individual, cultural and ethnic diversity of students, even if they are in mainstream education.
There has been little progress in implementing the IDEA since the last reauthorization. I point out that the cause of special education and general education is no less a war than our country is now waging against terrorism. In the special education war, victory can be guaranteed because we know who the enemies are. The problems are obvious. I believe that IDEA will have made major achievements when every high school student has some knowledge of early childhood development and the role of early intervention services; when students in middle schools understand that their peers learn in different ways; when disabled students will be accepted as respected members of school by students without disabilities. Without more serious effort and adequate concern of government, educational funds will continue to be wasted in halfhearted efforts. I pray that we find enough love and resolve in our hearts to take up this challenge whole-heartedly.
Top