Russell Silver Syndrome: A Case Study
Russell Silver Syndrome (RSS) is a rare disorder with a wide spectrum of findings. Symptoms vary widely and affected people will not have all of them. They include:
Growth hormone can be given at age 2 for this form of dwarfism. The Magic Foundation, www.magicfoundation.org, is the definitive resource for this condition.
MAC’s case study will examine a now 18 month old girl over a nine month period, applying transdisciplinary principles in play-based sessions. Results will be placed on the website and, in addition, shared with the Magic Foundation. This case study of a toddler appears to be the first done in this age group. MAC is grateful to the parents for this opportunity, as well as for what can be learned about RSS to add to the current body of literature.
News articles interest for the MAC community.
Less than half of the 50 states in America meet their obligations to disabled students under the IDEA. The annual U.S. DOE review found only 22 states met IDEA standards, whereas last year 24 states met those standards. Those states are Alabama, Delaware, Iowa, Kansas, Kentucky, Massachusetts, Minnesota, Missouri, Montana, Nebraska, New Hampshire, New Jersey, North Carolina, North and South Dakota, Oklahoma, Pennsylvania, Tennessee, Virginia, West Virginia, Wisconsin and Wyoming. All other states fell into the “needs assistance” category.
Betsy DeVos, current head of the Department of Education, presented hew views on special education at the OSEP Leadership Conference, emphasizing the most recent U.S. Supreme Court decision in Endrew F. v. Douglas County School District. Special education must give more than minimal services and have the options that all families have, she said. “Parents of children with disabilities know best. They should be the ones to decide where and how their children are educated”.
40% of all school-age children in special education are classified as LD. The National Assessment of Educational Progress noted that students with LD get worse scores than students with disabilities overall. For example, in 4th grade reading, 69% with any disability scored “below basic” compared to a score of 85% of students with LD. For students without disability, the score was 27%.
Parents who accept vouchers must inquire as to whether or not they are giving up their rights under IDEA. They appear to lose most of the rights guaranteed to them under IDEA. Public schools sometimes transfer children they cannot serve into voucher programs because of the drain on their budgets. Private school choice options that require waiver of IDEA rights are in Florida, Arizona, Colorado, Georgia, Oklahoma, Mississippi, Tennessee and Wisconsin. In addition to loss of rights, parents may be responsible for any additional fees a private school charges that are not covered by the voucher. In addition, students with behavior problems can be suspended and not asked to return. Parents are largely unaware that their children are not protected by state or federal law in these programs.
Buy Marilyn Arons’ book about her life and work in special education – NonLawyer Lady on Amazon
The Nonlawyer Lady presents the life and work of Marilyn Arons in special education. Mrs. Arons created the first Parent Information Center in the United States in 1977, developed the first parent training programs in special education, and pioneered the field of nonlawyer practice in due process hearings. Her work was controversial because she was not a lawyer, though considered a leading expert in special education law. She was also a political activist who organized parents and professionals to fight local and state corruption in the field of special education. She examined how states used federal money in the award of discretionary grants and their implementation. She worked without pay for three decades for thousands of families of disabled children who could not find representation to litigate or mediate disputes with local school districts. She never advertised, her fame growing by word of mouth. Her work began in New Jersey in 1976 and continued until 2007.
(Taken from “Special Education Is Hidden Target in Health Bill”, Erica L. Green, New York Times, 5/4/17)
How will the new American Health Care Act, with deep cuts in Medicaid, impact special education students? School districts rely on Medicaid to provide costly services to millions of disabled students across the country, covering costs for equipment to therapy to feeding tubes. It also provides preventive care such as vision and hearing screenings. The new law, passed by the House on May 4, 2017, cuts Medicaid by $880 billion over 10 years and imposes a “per capita” cap for certain groups of people, such as children and the elderly. In January a survey of almost 1,000 school districts in 42 states had 70% report that they used Medicaid money to pay for health care salaries for those who care for special education students. More than 50 school districts and advocates across the country, the Save Medicaid in Schools Coalition, sent letters to top lawmakers saying that the new bill would force rationing of care for children. Schools would have to compete with hospitals, clinics and other entities for Medicaid funding for children. The new bill no longer considers schools eligible Medicaid providers, so not entitled to reimbursements. There is uniform agreement that these cuts will be devastating to the vulnerable children in special education.
In San Francisco there is a special court for young adult offenders called the Young Adult Court, established in 2015 after the district attorney attended a neuroscience lecture at Harvard. It was learned that maturing brains do not fully develop until the middle 20s. After that lecture, punishments were based on neuroscience, tailored to the biology and circumstances of the offenders, ages 18-25. This experiment was implemented because current approaches across the country are not working, young offenders returning to jail off and on throughout their lifetime. Clinical psychologists trained the court’s staff in order for the offender to avoid lifelong entanglement with the criminal justice system.
Researchers emphasized that there is a difference between cognitive capacity and psychosocial maturity, which includes impulsivity, risk perception, thrill-seeking and resistance to peer influence. A test for “emotional brain age” was developed, finding that those with younger brain age tended to prefer riskier behavior. Variability was highest among young adults.
Six such courts now exist in states ranging from Idaho to Nebraska and New York. Sentencing to avoid incarceration includes checking in with the judge once a week, employment, housing, and educational support. Weekly therapy sessions and life-skill classes are also required.
Why isn’t this model used in public education? It is not even used in special education currently or in approaches involving Response to Intervention (RTI), used to prevent special education referrals. Schools and educators generally continue to look at behavior as though it had nothing to do with brain development and how that brain interacts with its environment. This is particularly true of the education of very young children. Teacher training programs do not emphasize the role of the brain in learning and behavior. If it did, outcomes would surely improve. It works for young adults in this Young Adult Court. Let’s apply it to our kids instead of paying only lip service to the role of neuroscience in education.
(Based on A Court Calls on Science, Tim Requarth, Science Times, The New York Times. 4/18/17).
Marilyn Arons, MAC Director & CEO
Special education has become the land of the living dead. Laws go unenforced by state and federal agencies, school staff are largely untrained in IDEA (Individuals with Disabilities Education Act), and school district attorneys often make decisions for the child study teams when no legal action is pending. There are few if any advocates left who know what they’re doing, and there are no affordable lawyers for parents. This is the context for the most recent special education decision from the U.S. Supreme Court in a unanimous ruling on March 22, 2017.
Endrew F. v. Douglas County School District is about an autistic child whose parents placed him unilaterally in a private school due to lack of progress in the public school. They then sought reimbursement for that placement. At issue was the level of special education services that are required in order to comply with IDEA. Was it a minimum level of service or a higher standard of a free appropriate public education? At its core, this SCOTUS opinion addresses the importance of the IEP and the process for developing it to provide more than minimal benefit to each handicapped child. The decision states:
At this juncture in special education there are no more individualized IEPs. Rather, they are boiler-plate goals and objectives generated from the school’s computerized bank of IEP goals and objectives and based solely on classification and a predetermined placement. None of them minimally comply with the requirements of IDEA. But there is nobody around to monitor or supervise either the process or the outcome. Unless there is vigorous parent input, either with or without an expert or advocate, no IEP is developed to meet either the academic or functional needs of the student. Staff is not trained, they are over worked, and state and local budgets do not support higher levels of service.
Today’s young parents do not appear interested in learning how to develop IEPs and prefer to hire an expert to do the job. Those who cannot afford outside help or fail to learn how to write an IEP, the vast majority, get essentially nothing for their children. Therefore, the gift of this SCOTUS opinion is only as good as the awareness it brings. Perhaps the most critical implication of this decision is to emphasize the absolute importance of the IEP. It is not just worthless paper that parents sign if they agree with the contents. It is the individualized instructional program that is to improve the life of the disabled child, with the parents playing a key role in its development. Now, with this opinion, there must be more individualized services for each child at a higher level. Let’s see if that happens.
MAC will conduct 3 sessions to help parents prepare to develop next year’s IEP.
Your review of the current IEP at least once a year, often on the date of last year’s meeting. Schedule the meeting before the end of the present school year so as to address next year’s needs.
MAC’s Free Annual Review Preparation Meetings:
Time: 7-9 P.M.
Place: 210 Carlton Terrace, Teaneck, NJ
Reservation required. Call 201-692-7908
Materials: Bring all current evaluations, report cards, and 2016 IEP.
MAC’s letter to Judge Robert Giordano and Laura Saunders concerning an OAL project.
MAC’s letter to the American Psychiatric Association regarding the request to differentiate autism from SPD, This letter actualizes one of the recommendations in our June case study.
All involved with special education must know that two cases have been accepted by the Supreme Court to hear this term. This is particularly important since there are only 8 Justices, and because IDEA has not been reauthorized since 2004. The 2 cases are:
In 2015, a new federal law was passed, the Every Child Succeeds Act. This addresses all at risk populations, English language learners, homeless, drug addiction, etc. except special education. States’ special education advocates are forming groups to determine how to implement this K-12 law so as to be part of state determinations regarding implementation and the failure of the federal and state governments to enforce IDEA while considering how every other child is to succeed.