ELLEN'S WAY

NSSA (Nassau Suffolk Services for Autism )

2012-01-23T00:00:00.000-08:00

Ellen’s Way is concentrating on Autism and the people that help families to cope, develop new hope, create a means to educate and give all life meaning. NSSA, Nassau Suffolk Services for Autism is just such an organization, that Ellen’s way wishes to highlight.

PHILOSOPHY

NSSA believes that each individual with autism, as well as their family members, deserve access to resources that will help them maximize their full potential. NSSA is dedicated to developing and providing those resources so that individuals with autism will be able to live lives filled with promise, dignity, and purpose and their families will have hope as well as peace of mind.

WHAT IS AUTISM?

Autism is a complex neurobiological disorder that is characterized by deficits in the ability to learn, to communicate, and to form social relationships. Current estimates by the Centers for Disease Control and Prevention put the prevalence of autism at 1 in 150 children born today, making autism more common than pediatric cancer, diabetes, and AIDS combined. Autism occurs across all racial, ethnic, and social groups and its effects typically last a lifetime.

Autism is described as a spectrum disorder because its symptoms vary from individual to individual both in terms of severity and variety of behavioral traits.

Autism is a long hard and large battle. It encompasses all members of the family in all walks of life, and in all levels of the social stratosphere.

Providing services to meet the unique needs of individuals and families battling autism, maximizing potential, enabling individuals with autism to fully participate in family life, preparing for the transition to increasingly less restrictive educational environments, developing skills for future employment, and to develop skills to enable full participation in community living, give Nassau Suffolk Services for Autism its mission.

Mission Statement

Nassau Suffolk Services for Autism offers hope to people with autism and their families by providing high quality life-long support through services which enable people with autism to function better in everyday life. NSSA offers the most advanced treatment and training programs for the benefit of people with autism, and will continue to pioneer, through research, comprehensive treatment models which can be adopted nationally.

Some of the characteristics displayed in people with autism are:

Delay or lack or loss of speech
Lack of eye contact
Lack of response to other people
Treating others as if they were inanimate objects
Repetitive behaviors such as spinning or flapping hands
Balancing in precarious places
Eating, sleeping, and toileting difficulties
Extreme dislike of certain noises or textures
Extremely passive or extremely active behaviors
Dislike of being touched
Over-sensitivity or under-sensitivity to pain or sound
Failure to demonstrate typical signs of affection
No fear of danger
Restrictive range of interests
Extreme dislike of certain foods
Aggressive behavior
Lack of interest in toys
Desire to keep objects in rigid patterns
Desire to follow certain patterns of behavior
Self injurious behavior
Areas of advanced skill (in art, music, arithmetic, calendar, or memory)

Checklist for Autism in Toddlers

The Checklist for Autism in Toddlers is a screening tool to be used by Pediatricians during the 18-month developmental checkup.

Section A - Ask Parent: Yes or No?

Does your child enjoy being swung, bounced on your knee, etc?
Does your child take an interest in other children?
Does your child like climbing on things, such as up stairs?
Does your child enjoy playing peek-a-boo/hide-and-seek?
*Does your child ever pretend, for example, to make a cup of tea using a toy cup and teapot, or pretend other things?
Does your child ever use his/her index finger to point, to ask for something?
*Does your child ever use his/her index finger to point, to indicate interest in something?
Can your child play properly with small toys (e.g. cars or bricks) without just mouthing, fiddling, or dropping them?
Does your child ever bring objects over to you, to show you something?

As one can see, this organization looks at all aspects of dealing with autism, taking an intelligent and realistic approach. You can find them on the Internet at:

http://www.nssa.net/index.html

NSSA currently offers an educational program, consultation services to Long Island school districts, in-home respite services, a Saturday recreational program, an adult services program, Assistive Technology Program and Summer Camp program. All of our programs are staffed by trained employees who are supervised by Masters or Ph.D. level psychologists and special educators. Our support is derived from the New York State Education Department, the Office of Mental Retardation and Developmental Disabilities (OMRDD), and private fundraising.

Education Program / The Martin C. Barell School

In January 1993, NSSA was proud to open The Martin C. Barell School, named in honor of then New York State Board of Regents Chancellor, Martin C. Barell. Chancellor Barell shared our vision and advocated for our programs to the New York State Education Department. The Martin C. Barell School provides a full-day, twelve-month program for preschool and school age children ranging in age from three to twenty-one years. It enrolls a maximum of twenty-five students, with an instructor-to-student ratio of 1 to 1.5. The small size and high teacher-to-student ratio are integral to achieving optimal results for each student. They allow for the promotion of a significant degree of individualization of each student’s program, curriculum, reinforcement and motivation systems, as well as intensive clinical oversight and on-going data analysis.

The highly structured program is based on the principles of Applied Behavior Analysis (ABA), in which each child has behaviorally defined and measurable goals. Each child’s progress is reviewed regularly so that if the child is not learning, adaptations to the teaching method can be made immediately. On-going assessment of each student’s reinforcement preferences leads to the development of highly individualized motivation systems for all students. Ultimately self-monitoring, or the ability to deliver one’s own reinforcement in the absence of teacher supervision, is the goal of each system. Students receive instruction in a variety of settings (i.e. in the classroom, at home, and in the community). Student-to-teacher ratios are based on the individual needs of each student. Some receive instruction on a one-to-one basis for some or part of their day, others are taught in small groups, and still others are slowly integrated into public school special or regular education classrooms in their home district.

Each student’s program is designed to teach pre-academic and academic skills, communication, recreation, socialization, and daily living skills. Depending on the needs of the student, behavior reduction plans to reduce and replace inappropriate behaviors are designed, implemented, and monitored on an on-going basis. Careful attention is placed on the systematic generalization of skills from school to the home and into the community. The goal of each child’s program is to increase independence, communication, and socialization skills and to enable students to maximize their full potential and become contributing members of their families and communities.

An ABA trained Master’s level Speech and Language Pathologist provides on-going consultation to the education program. This affords NSSA’s clinical staff and students’ access to the most current knowledge from the field of Speech and Language Pathology. Recommendations based upon on-going evaluation, observation, and discussion with the clinical team, are then incorporated into each child’s program. This collaboration between disciplines enhances the quality of programming and optimizes the communication skills of each student.

Parents play an integral role in their child’s education. At the Martin C. Barell School parents receive extensive training, both in school and at home, in the principles and application of behavioral theory and teaching techniques. This training empowers the parents to be active participants in their child’s education program and enables them to support the transfer of newly acquired skills to the home and community. In addition, families receive specific instruction in their home on an as needed basis, to address goals and challenges specific to their child and family (e.g. eating and/or sleep disorders, aggression, dining out in restaurants, attending a sibling’s sporting event, etc.) Family support is also provided through NSSA sponsored parent and sibling support groups and on open door visitation policy.

RESPITE AND RECREATION PROGRAMS

NSSA receives funding through the New York State Office of Mental Retardation and Developmental Disabilities to provide much needed respite services to families struggling with the responsibility of caring for a child with autism. Services are provided during the day or evening in the family’s home by NSSA-trained staff members.

In addition to in-home respite services, NSSA offers a bimonthly Saturday recreation program. The program is held at NSSA twice monthly from 10 am to 3 pm. The program, which is also staffed by NSSA-trained staff members, offers a variety of leisure and recreation activities to individuals with autism. These activities include arts and crafts, baking, sports, game playing, puzzle and block building, and music participation.

CONSULTATION SERVICES PROGRAM

NSSA is deeply committed to providing quality services to individuals with autism residing in Nassau and Suffolk counties. As such NSSA continually strives to increase the availability of these services to children and families in need. The provision of consultation services to school districts is one way that NSSA fulfills this commitment.

NSSA staff provides observation and assessment of students with autism in public and private school settings at the request of the student’s home school district. In addition, NSSA provides training and consultation services to district personnel supporting students in inclusion or self-contained public and private school settings and home programs.

ADULT SERVICES PROGRAM

In 2004 when the first student attending NSSA’s Martin C. Barell School reached the age of twenty-one and could no longer be served in the Education Program, NSSA launched an Adult Services Program to serve the needs this student and the many others who will graduate after him. With each passing year NSSA will be serving an expanding population in its Adult Services Program.

Through this program, NSSA is helping to foster the skills that develop greater independence for our clients throughout their lives. Whether through job sampling, or job training, NSSA works to ensure that the adults we serve are still able to grow and develop to their maximum potential. Our primary concern for the adults that we serve is that they continue to grow to their greatest level of independence through employment and skills required of daily living. The intricacies of appropriate behavior in the community are also addressed through the Adult Services Program.

NSSA’s commitment is to high quality lifelong support. Through the Adult Services Program, NSSA is living up to that commitment.

ASSISTIVE TECHNOLOGY PROGRAM

NSSA launched its Assistive Technology Program in order to better address the learning and communication needs of individuals with autism spectrum disorders through the use of technology. The program provides evaluations of individuals with autism spectrum disorders to identify reading, writing, and communication strengths and weaknesses that can be remediated or compensated through the use of Assistive Technology (AT). The program also provides consultation services and on-going support and training to educators, service providers, and family members on the incorporation of AT into the school, home, and community settings. NSSA works directly with the child’s education team and family members to modify curriculum, facilitate learning, and meet the child’s communication needs in varied settings. The Assistive Technology Program also provides continuing education to those working with and caring for individuals with ASDs on existing technology to help remediate both communication and literacy deficits. On-going training and demonstrations to professionals and family members will help them identify simple technology solutions to remediate many learning and communication challenges of autism.

http://www.nssa.net/index.html

Helpful Links:

Organization for Autism Research www.researchautism.org
Global and Regional Asperger Syndrome Partnership www.GRASP.org
Aspergers Syndrome and High Functioning Autism Association www.ahany.org
Autism Speaks www.autismspeaks.org

$13 MILLION AWARDED BY AUTISM SPEAKS!

2012-01-16T00:00:00.000-08:00

A total of 47 grants for research projects and programs were awarded over $13 million by Autism Speaks for scientific research on ADS and treatments.

Here is how the money is broken down;

Environmental Impact-These studies will look at such risk factors as premature birth and prenatal exposure to infections and air pollutants. One study will examine how environmental influences can affect gene expression.

Biomarkers-Researching of early biomarkers could be useful in identifying infants who are at risk for developing autism. Such subtle aspects of brain biology, motor impairment and learning delays could improve early diagnosis in ways that can lead to earlier intervention and improved outcomes.

The first U.S. autism prevalence study using total population sampling methods. Current U.S. prevalence rates of 1 in 110 are based on records of autism-related services and, as such, may miss many undiagnosed children and adults in the community. The need for such a study was underscored last year, when a similar community-wide study found an autism prevalence of 1 in 38 among schoolchildren in South Korea. (That study was likewise funded by Autism Speaks.)

The creation of the world’s largest whole-genome library of individuals with autism. This historic collaboration with the Beijing Genome Institute promises to speed understanding of autism’s root causes and guide the development of medicines that may relieve autism’s most disabling core symptoms.

√ Studies of animal models designed to identify brain pathways involved in autism and test five compounds that may help restore healthier functioning to these brain pathways.

Studies on adult development- including research into sleep disorders, quality of life assessments and predictors of positive long-term outcomes in adults with ASD.

Updates on the economic cost of autism- including assessment of how particular services and supports may reduce lifetime costs.

Development of new methods for increasing access to diagnosis and early intervention services in underserved, low resource communities in North America and abroad.

In all, this round of funding includes 30 grants for basic research and clinical studies, 5 grants for international studies within Autism Speaks Global Autism Public Health initiative and 12 postdoctoral fellowships in translational research. As its name suggests, translational research seeks to advance basic science into the realm of medicines, technologies and other interventions that have immediate benefits to those struggling with autism.

“These hopeful studies and targeted research projects are made possible by the generous support of our families, fundraisers and donors,” says Autism Speaks Chief Science Officer Geri Dawson, Ph.D. “Together we are delivering advances in prevention, diagnosis treatment and assistive technologies to all those who struggle with autism.”

The ATN is the nation's first network of hospitals and physicians dedicated to developing a model of comprehensive medical care for children and adolescents with autism. The ATN offers families care from doctors highly experienced in helping individuals with autism and providing treatment for associated conditions such as gastrointestinal and sleep disorders. ATN doctors are dedicated to finding better ways to manage the health of children with autism and sharing their increasing knowledge across the wider medical community. In particular, the ATN is dedicated to developing better ways to identify, manage and treat the physical health conditions of children with autism. And as treatments for these conditions become better defined and recognized, it is the aim of the ATN to see insurers routinely recognize the autism diagnosis and cover physical health treatment.

Baylor College of Medicine Autism Treatment Network,

ATN 2011- BCM/TCH

Status: Active

Investigator: Kanne, Stephen

Institution: Baylor College of Medicine

Grant Amount: $75,000.00

Grant Term: 3 years

Award Type: Autism Treatment Network

City: Houston

State: TX

Country: United States

Year: 2011

Website: http://www.bcm.edu

Description

IT’S THE MONEY STUPID

2012-01-09T00:00:00.000-08:00

Individuals with disabilities, who reside in NYS and receive services, will soon be seeing those services changed in a profound way. Called Medicare Waiver Reform, the changes are eyed with the idea that both the state and federal governments would cut the cost of services for those people in need.

Having lived long enough with the ideas that come out of the state level, I anticipate great shock, dismay and anger, not to mention the waste that will occur from this noble idea. If there ever was a cause for: If it ain’t broke, don’t fix it.” THIS IS IT! Usually in these circumstances, the quality of care, as well as the choice will be reduced and any alternatives to resources for corrective care will be tossed to the wayside by some mis-guided hacks that dream up this stuff.

I have reproduced some of the gobbely-gook that was written, language so convoluted, confusing and downright misleading, that it is designed to confuse the reader and all the advocates of people with special needs.

OPWDD 1115 PEOPLE FIRST WAIVER

It is called “People First Waiver”, and it is designed to deceive those who advocate for special needs people. It is not “People First”, but “Money First”, and it is like saying: An infant that receives formula will no longer get formula, but watered down milk because it is cheaper! If this is what you wish for your child or sibling, then I suggest you support this waiver and Governor Cuomo whole -heartedly.

Whatever the state of New York professes loudly about those with special needs, quietly along with the Federal Government, they plot behind the cover of confused jargon, mixed messages and an agenda that once again makes the folks with special needs pay. The State under Il Duce’ Andrew Cuomo, intends to dance around the issues of care providing and Medicare Services, by outsourcing services to outside non-governmental super-agencies called DISCO’s.

The only thing that seems to change is the name that Il Duce’ and his hacks has contrived. DISCO stands for Developmental Disabilities Individual Support and Care Coordination Organizations.

If you were to ask any of the state representatives who are fully touting this scheme to pair down the current costs to explain the waiver, you will be greeted with the look of a deer in the headlights of a fast approaching Mack Truck in the middle of the night. I have sat through attempts by state people to explain it, and it is just as painful for them as it was for me to hear and understand it.

The new system will seem like managed care HMO as in the health care system, where subscribers receive all of their health care services within an HMOs network of providers. The provider of these services is paid a single fixed premium payment (minus deductibles and co-payments), and the subscriber assumes the financial responsibility for paying the cost of the services that are delivered to the plan subscribers as negotiated in its contracts with the provider.

If you are familiar with managed care providers, you know how notorious they are for red tape and inferior services. This is what the Medicare 115 Waiver will provide for people with developmental disabilities and special needs.

What makes you think that the DISCO’s won’t be facing the same issues of costs, and the idea that they have to cut down or limit those costs: on the backs of those they are supposedly helping? How will the care be any better or even on a par with what we now have?

Agencies and independent therapists will soon come under pressure to reduce their costs and if so, their quality of care and either be merged into a large system or leave the field completely. They will have to comply with the State mandates.

The Medicare Waiver 1115 calls for many of the current services of the New York State Office for People With Developmental Disabilities (OPWDD), formerly known as OMRDD, to be outsourced to the DISCOs, which are not under government control, directly or indirectly!

The DISCO’s are supposed to offer to Medicare recipients all the services they are legally entitled to, as well as overseeing the services and paying for them. In return for such provisions, the DISCO’s receive a capitation flat rate provided by the federal government per person. In the past the service was as a fee per service based on historical costs of the provider.

DISCOs will be paid a flat per-person rate established by the Cuomo administration for a standard spectrum of services for individuals with the same category of diagnosis. The DISCOs will subcontract the actual delivery of the services to

community providers, with whom they will negotiate the reimbursement the provider will actually receive. Current community service providers will have to compete with one another for DISCOsubcontracts.

Since the DISCOs pocket any difference between the flat rate the state pays them and what they pay the providers, the DISCOs will choose service providers largely on the basis of lowest cost, and in some cases, will be providing the services themselves. Over time, the higher cost providers will be eliminated, even if they provide higher quality services, and the quality of care will inevitably suffer.

Care recipients are supposed to be offered a choice of DISCOs, but given the powerful incentives for each DISCO to cut costs built into the new system, it is doubtful that the choices will be meaningful. Furthermore, since the DISCOs are expected to monitor themselves, the ability of care recipients and their family members to file effective complaints will be significantly reduced.

What’s really behind all this?

The state’s top priority is to cut the cost of services, while barely maintaining service quality and meaningful patient care or choice.

The goal of New York State is clearly laid out in the report of the fiscal team designing the 1115 Waiver. Medicaid expenditures for people with special needs and developmental disabilities have grown at twice the rate of inflation and three times faster than personal incomes.

2.8 percent annual growth in individuals seeking services is due largely outside the control of State government. The Waiver’s initiative is, “to meet individuals’ needs, but at lower cost. The capitation method is the planned way to go. It’s about the money, plain and simply.

State officials claim the current system of 750 groups providing services is “financially unsustainable,” and they hope to eliminate the higher cost providers with the new 1115 Waiver system.

In November, the state began implementing planning and evaluating the new system and will launch pilot programs under the system and test DISCO operations in the latter part of 2012.

Will the 1115 Waiver bring us all the way back toward the Willowbrook days? Will all the gains the industry has made be lost in the need to fix something so complex, yet so simple that we will gain nothing but lose everything?

HOSPICE AND PALLIATIVE CARE ASSOCIATION OF NEW YORK STATE

2012-01-02T00:00:00.000-08:00

Here in New York State, hospices honored patients and families coping with life-limiting illness. National Hospice and Palliative Care Month (November) also provided an opportunity to celebrate the health care professionals who provide patients and families with expert medical care, pain- and symptom management and emotional and spiritual support. The provider members of Hospice & Palliative Care Association of New York State (HPCANYS) give the care we would all want at the end of life.

The National Hospice and Palliative Care Organization (NHPCO) reports that in 2009, 1.56 million patients received services from hospice and approximately 41.6 percent of all deaths in the United States were under hospice care. Furthermore, they have found that eight out of ten Americans would want to be cared for in their homes if facing a life-limiting illness. Whether its the family home, nursing home, residential facility, or hospice inpatient setting, hospice teams strive to reach all appropriate patients and families wherever compassionate end-of-life care is needed.

Having hospice is a wonderful end of life experience that I witnessed first hand. Having a father who was dying from cancer, the care given was not about Dad, but about all of us who had to brace for this experience. It is having someone who can take you by the hand and guide you through the most difficult decisions you can make for your loved ones who are facing death, and the friendly warm hearts of those who come into the home and comfort those about to leave us.

Dad was able to face death with a different perspective, that he shared with his family, all because someone from hospice. His end of life experience, although he suffered, was one of grace, humor and dignity, as he was able to accept the end of his life.

The Developmental Disability Hospice & Palliative Care

MISSION STATEMENT

“To promote the availability and accessibility of quality hospice and palliative care for all persons in New York State confronted with life-limiting illness.”

The Developmental Disability Hospice & Palliative Care site was developed to bring together Developmental Disabilities, Hospice and Palliative Care providers and advocates who have an interest in improving end-of-life and supportive care for persons with developmental disabilities, as well as their families and their staff caregivers.

For information, news, resources, newsletters and previous forum discussions visit the Developmental Disabilities, Hospice and Palliative Care Forum website at: http://www.ddhospiceandpalliativecare.org/

Having a child with developmental disabilities and having lost a child when he was 290 months old with developmental disabilities, and witnessing the work and value of hospice, I can tell you I wish I had it when my son died, and if need be, will have it for my daughter if it ever comes to that day.

Death is a part of life, whether we recognize it or not. Sometimes it is a blessing, no matter how unacceptable it is. When I see the disabled population and the suffering I do witness, I know that life can be the real death for those that suffer. None of us can equate how we feel with people with disabilities, we can only guess.

Hospice is but another layer of the process we call dying. It is not to say we have given up, it is to say we are assisting in the palliative care of easing pain, assisting the doctors and nurses and care-givers that tend to our disabled population, and it is the most vital tool of all. It takes us all to a central point and we begin the final journey in the process called dying.

End-of-Life Wishes

2011-12-26T00:00:00.000-08:00

Communicating End-of-Life Wishes Pays Off Where Aggressive Treatment Is the Norm

A new study finds that when medical personnel know what kind of care a patient wants at the end of life, Medicare can be spared significant sums and the patient is more likely to die at home rather than in a hospital, at least in certain areas.

The study, published in the October 5, 2011, issue of the Journal of the American Medical Association, found that in regions of the U.S. that tend to spend the most on end-of-life care, patients who have "advance directives" cost Medicare about $5,600 less per person. (Advance directives allow patients to communicate their end-of-life wishes if they are unable to do so themselves.) These patients' quality of life also appeared to be better; they were more likely to receive hospice care and to be at home when they died.

But the differences in spending and care did not hold up in regions of the country with low- to average end-of-life expenditures. The researchers speculated that in these areas, less aggressive care at the end of life is already the norm and more in line with what many patients want. In high-spending regions, by contrast, an advance directive may embolden caregivers to go against the local norm of aggressive treatment and prolonged hospital care. In 2006, treatment during the last year of life accounted for more than one-quarter of Medicare expenditures.

Advance directives typically include a "living will" that gives instructions regarding treatment if the individual becomes terminally ill or is in a persistent vegetative state. It may contain directions to refuse or remove life support in the event the individual is in a coma or a vegetative state, or it may provide instructions to use all efforts to keep the person alive, no matter the circumstances. Most participants in the study who had advance directives specified that they wanted to limit treatment.

"[The study] absolutely highlights some of the reasons why you should both talk to family, friends and physicians about the type of care you might want to receive, should you be unable to make your own decisions," said Lauren Hersch Nicholas, the study's lead author and a health economist at the University of Michigan.

Second Study: Aggressive Treatment Doesn't Prolong Life
A related study just published in the medical journal The Lancet has found that nearly one of every three Medicare beneficiaries had an operation in their last year of life.

Operations were more likely in regions with a greater availability of hospital beds and higher levels of Medicare spending. But the higher rates of surgery didn't necessarily pay off. The regions where doctors were more likely to operate had higher patient death rates.

"This level of surgical intensity doesn't seem to be having much in the way of benefit for the population," Dr. Ashish Jha, the study's author and an associate professor of health policy at the Harvard School of Public Health, told ABC News. "Our sense is that there are probably lots of unnecessary procedures that go on at end of life."

Each state has its own laws on advance directives. Caring Connections, a site run by the National Hospice and Palliative Care Organization, offers state-by-state information on advance directives
Advance medical directives are an integral part of the estate planning services provided by elder law attorneys.

TO THE NEW YORK TIMES EDITOR

2011-12-22T11:58:00.000-08:00

Dear Sir,

I must as a parent of a child with developmental disabilities, and member of the Board of Directors of Suffolk AHRC, take exception to your reporting and fact finding. I find it disturbing that you would choose a policy of disinformation, and misleading ‘facts’.

The agency I serve has a board consisting of active and concerned parents, who run our agency, and whom the staff from the CEO down to the lowest paying job is responsible to. That is because we love our children and siblings.

We as an agency have checks and balances in place to insure that the safety and practices of our agency are correct and constant.

I am a former president of the board and a current co-chair of the Guardianship committee, a group of deeply concerned individuals who monitor the health and fiduciary concerns of those we serve. I participate with staff first hand and can vouch for the people that serve those most vulnerable.

I have often attended doctor’s visits for my developmentally disabled daughter on a regular basis, and know that the staff to be dedicated and concerned. These are people that are underpaid because as an agency we rely heavily on fund raising, and although as a not-for-profit agency we save the state untold millions, they can not give the direct care workers wage parity with state employees.

Our agency puts approximately 95% of the money we raise into our programs, that means that only 5% goes into administration. We have an exemplary record as an agency and hire only the best people possible to spend that money and run it.

I am also a member of NYSARC, the governing board of state-wide agencies that is our umbrella organization. Like any company or organization, we do have issues, and we deal with them effectively, and immediately.

I am angered that you and your newspaper would be so careless as to report what you have, without fully seeing everything yet painting a dishonest and misleading picture about the people that work so hard because they are so dedicated to those they serve.

I suggest you realize that the way the state works and the way we parents work are two very different ways.

Thank you,
JOE DEL BROCCOLO

TYPE 2 DIABETES

2011-12-19T00:00:00.000-08:00

One of the most common diseases, without a cure is Type 2 Diabetes. But just what is it, which affects so many people, particularly children? How is it contacted, dealt with and is there a cure?

In people with type 2 diabetes the body does not make enough insulin, and the insulin that the body produces does not work as well as it should. The body can also make too much sugar. When this happens, sugar (glucose) builds up in the blood. The main goal of treating diabetes is to lower blood sugar to a normal level.

If you have type 2 diabetes, keeping track of your daily blood sugar numbers can help you understand how your blood sugar responds to food, exercise, and medications you may be taking.

The hallmark characteristic of type 2 diabetes is insulin resistance. The pancreas typically produces enough insulin (often too much insulin); however, cells are resistant to the insulin and it may not work as effectively. Type 2 is the most common form of diabetes, and most individuals with the disease are adults. However, children and adolescents can develop type 2 diabetes too, particularly if they are overweight and have a history of type 2 diabetes in their family.

Type 2 diabetes is treated with diet, exercise, and in some cases, oral medication and/or insulin. Self-monitoring of blood glucose levels is also important to assess how well treatment is working.

Often, people with type 2 diabetes have no symptoms at all. If you do have symptoms, they may include:

Blurred vision, There are many types of eye problems and visual disturbances. These include blurred vision, halos, blind spots, floaters, and other symptoms. Blurred vision is the loss of sharpness of vision and the inability to see small details. Blind spots (scotomas) are dark "holes" in the visual field in which nothing can be seen. For the most severe form of visual loss,

Erectile dysfunction, An erection problem is the inability to get or maintain an erection that is firm enough for a man to have satisfactory intercourse. You may be unable to get an erection at all, or you may lose the erection during intercourse before you are ready. If the condition persists, the medical term is erectile dysfunction.

Fatigue, Drowsiness, physical exhaustion and sleepiness

Frequent or slow-healing infections, an infection is a condition in which viruses, bacteria, fungi, or parasites enter the body and cause a state of disease. Such invaders are called pathogens. They damage cells of the body by adhering to and damaging the cell walls, releasing toxic substances or causing allergic reactions. The body has a set series of responses to infection, which mostly involve body chemicals, body tissues, and the immune system. It was recently reported that infection is the fourth leading cause of death in the United States and kills more people than cancer and heart disease combined.

Increased appetite,

Increased thirst, Dry mouth, known medically as xerostomia, is the abnormal reduction of saliva due to medication, disease, or medical therapy.

Increased urination Excessive volume of urination means that you release abnormally large amounts of urine each day. The medical term for this condition is polyuria.

Definition

Diabetes mellitus is a chronic disease in which the body is not able to correctly process glucose for cell energy due to either an insufficient amount of the hormone insulin or a physical resistance to the insulin the body does produce. Without proper treatment through medication and/or lifestyle changes, the high blood glucose (or blood sugar) levels caused by diabetes can cause long-term damage to organ systems throughout the body.

Description

There are three types of diabetes mellitus: type 1 (also called juvenile diabetes or insulin-dependent diabetes), type 2 (also called adult-onset diabetes), and gestational diabetes. While type 2 is the most prevalent, consisting of 90 to 95 percent of diabetes patients in the United States, type 1 diabetes is more common in children. Gestational diabetes occurs in pregnancy and resolves at birth.

Every cell in the human body needs energy in order to function. The body's primary energy source is glucose, a simple sugar resulting from the digestion of foods containing carbohydrates (primarily sugars and starches). Glucose from the digested food circulates in the blood as a ready energy source for any cells that need it. However, glucose requires insulin in order to be processed for cellular energy.

Insulin is a hormone or chemical produced by cells in the pancreas, an organ located behind the stomach. Insulin bonds to a receptor site on the outside of a cell. It acts like a key to open a doorway into the cell through which glucose can enter. When there is not enough insulin produced (as is the case with type 1 diabetes) or when the doorway no longer recognizes the insulin key (which happens in type 2 and gestational diabetes), glucose stays in the bloodstream rather entering the cells. The high blood glucose, or blood sugar, levels that result are known as hyperglycemia.

An estimated 18.2 million Americans live with diabetes, and over 5 million of those remain undiagnosed. Up to 95 percent of diabetes patients in the United States have type 2 diabetes; the vast majority of Americans with diabetes are over 20 years of age. Those under 20 represent only 206,000 of the total cases of diabetes in the United States.

While type 2 diabetes is a growing problem among American youth due to climbing obesity rates and more sedentary lifestyles, type 1 diabetes is more prevalent in children and adolescents. An estimated one in 400 to 500 children have type 1 diabetes.

The American Diabetes Association reports that in 2002, diabetes cost Americans an estimated $132 billion in direct medical costs and indirect expenses such as lost productivity and disability payments.

Causes and symptoms

The causes of diabetes are not completely understood; however, there seem to be both genetic and environmental factors involved in the development of both type 1 and type 2 diabetes, meaning that a person may have a genetic predisposition to developing diabetes, but it takes an environmental factor such as a viral infection or excessive weight gain to actually make the disease surface.

Research has shown that some people who develop diabetes have common genetic markers. In type 1 diabetes, the immune system, the body's defense system against infection, is believed to be triggered by a virus or another microorganism that causes an autoimmune reaction that eventually destroys the insulin-producing cells (i.e., beta cells) in the pancreas. Up to 90 percent of cases of type 1 diabetes are the autoimmune subtype, sometimes called type 1A or immune-mediated diabetes.

The other subtype of type 1 diabetes is called idiopathic, or type 1B diabetes. People who have idiopathic type 1 diabetes also experience beta cell destruction, but it is due to a chromosomal abnormality or an unknown cause rather than any autoimmune process. Only tests for islet cell antibodies and other autoimmune markers can differentiate between the two subtypes, and because testing can be costly and treatment for both is the same (i.e., insulin), a physician may not necessarily order tests for autoimmunity.

Finally, damage caused by diseases of the pancreas (such as pancreatitis), endocrine disorders (e.g., endocrine tumors), and drugs or toxins can also destroy beta cell function.

In type 2 diabetes, family history, age, weight, activity level, and ethnic background can all play a role in the genesis of the disease. Individuals who are at high risk of developing type 2 diabetes mellitus include the following groups:

people who are overweight or obese (more than 20 percent above their ideal body weight)
people who have a parent or sibling with type 2 diabetes
those who belong to a high-risk ethnic population (African-American, Native American, Asian-American, Hispanic, or Pacific Islander)
people who live a sedentary lifestyle (i.e., exercise less than three times a week)
women who have been diagnosed with gestational diabetes or have delivered a baby weighing more than 9 lbs (4 kg)
people with high blood pressure (140/90 mmHg or above)
people with high density lipoprotein cholesterol (HDL, or "good" cholesterol) level less than or equal to 35 mg/dl and/or a triglyceride level greater than or equal to 250 mg/dl

Several common medications can cause chronic high blood sugar levels and/or promote insulin resistance. These include atypical antipsychotics, beta blockers, corticosteroids, diuretics, estrogens, lithium, protease inhibitors, niacin, and some thyroid preparations.

Both type 1 and type 2 diabetes share similar symptoms caused by chronically high blood glucose levels.

Symptoms of both type 1 and type 2 diabetes include:

excessive thirst
frequent urination
weight loss
increased appetite
unexplained fatigue
slow healing cuts, bruises, and wounds
frequent or lingering infections (e.g., urinary tract infection)
mood swings and irritability
blurred vision
headache
high blood pressure
dry and itchy skin
tingling, numbness, or burning in hands or feet

Symptoms of diabetes can develop suddenly (over days or weeks) in previously healthy children or adolescents, or can develop gradually, particularly in the case of type 2 diabetes.

Children and adolescents sometimes develop a condition known as diabetic ketoacidosis (DKA) at the time of their diagnosis. Ketones are acid compounds that form in the blood when the body breaks down fats and proteins for energy. When blood sugars are high (i.e., over 249 mg/dl, or 13.8 mmol/L) for prolonged periods of time, ketones build up in the bloodstream to dangerous levels. Symptoms of DKA include abdominal pain, excessive thirst, nausea and vomiting, rapid breathing, extreme lethargy, and drowsiness. Patients with ketoacidosis will also have a fruity or sweet breath odor. Left untreated, this condition can lead to coma and has the potential to be fatal. DKA is more common in people with type 1 diabetes, although it can occur in type 2 diabetes as well.

Symptoms of type 2 diabetes can begin so gradually that a person may not know that he or she has it. It is not unusual for type 2 diabetes to be detected while a patient is seeing a doctor about another health concern that is actually being caused by the yet undiagnosed diabetes, such as heart disease, chronic infections (e.g., urinary tract infections, yeast infections), blurred vision, numbness in the feet and legs, or slow-healing wounds.

When to call the doctor

If left untreated, diabetes is a life-threatening condition. Any child displaying symptoms of diabetes should be taken to a doctor or emergency care facility for evaluation immediately.

Diagnosis

Diagnosis of diabetes is suspected based on symptoms and confirmed by blood tests that measure the level of glucose in blood plasma. Dipstick or reagent test strips that measure glucose in the urine can only detect glucose levels above 180 mg/dl and are non-specific, so they are not useful in the diagnosis of diabetes. However, they are a non-invasive way to obtain a fast and simple reading that a physician might use as a basis for ordering further diagnostic blood tests for diabetes, particularly in children.

Blood tests are the gold standard for the diagnosis of both type 1 and type 2 diabetes in children and adults. The American Diabetes Association recommends that a random plasma glucose, fasting plasma glucose, or oral glucose tolerance test (OGTT) be used for diagnosis of diabetes. The OGTT is commonly used as a screening measure for gestational diabetes. Fasting plasma glucose is the test of choice unless a child is exhibiting classic symptoms of diabetes, in which case a random (or casual) plasma glucose test is acceptable.

Unless hyperglycemia is obvious (e.g., blood glucose levels are extremely high or the child experiences DKA), the fasting or random plasma glucose test should be confirmed on a subsequent day with a repeat test.

Fasting plasma glucose test

Blood is drawn from a vein in the child's arm following an eight-hour fast (i.e., no food or drink), usually in the morning before breakfast. The red blood cells are separated from the sample and the amount of glucose is measured in the remaining plasma. A fasting plasma glucose level of 126 mg/dl (7.0 mmol/l) or higher indicates diabetes (with a confirming retest on a subsequent day).

Random plasma glucose test

Blood is drawn at any time of day, regardless of whether the patient has eaten. A random plasma glucose concentration of 200 mg/dl (11.1 mmol/l) or higher in the presence of symptoms indicates diabetes.

Oral glucose tolerance test

Blood samples are taken both before and several times after a patient drinks 75 grams of a glucose-based beverage. If plasma glucose levels taken two hours after the glucose drink is consumed are 200 mg/dl (11.1 mmol/L) or higher, the test is diagnostic of diabetes (and should be confirmed on a subsequent day if possible).

Although the same diagnostic blood tests are used for both types of diabetes, whether a child is diagnosed as type 1 or type 2 can typically be determined based on her personal and medical history. The majority of children diagnosed in childhood are type 1, but if blood test results indicate prediabetes and a child is significantly overweight and has a history of type 2 diabetes in her family, type 2 is a possibility.

Further blood tests can help to differentiate between type 1 and type 2 when the diagnosis is unclear. One of these is an assessment of c-peptide levels, a protein released along with insulin that can help a physician determine whether or not a patient is producing sufficient amounts of insulin. The other is a GAD (Glutamic Acid Decarboxylase) autoantibody test. The presence of GAD autoantibodies may indicate the beginning of the autoimmune process that destroys pancreatic beta cells.

Dietary changes and moderate exercise are usually the first treatments implemented in type 2 diabetes. Weight loss may be an important goal in helping overweight children and adolescents control their blood sugar levels. Exercise helps keep blood glucose levels down and has other health benefits, as well.

Oral medications

Children with type 2 diabetes may be prescribed oral medications if they are unable to keep their blood glucose levels under control with dietary and exercise measures. As of 2004, metformin was the only oral medication approved by the U.S. FDA for use in children over age ten. Metformin (trade name Glucophage) is in the biguanide class of drugs and works by reducing the amount of glucose the liver produces and the amount of circulating insulin in the body. Other adult type 2 diabetes medications, such as sulfonylureas and meglitinide drugs, which work by increasing insulin production, may be prescribed off-label for pediatric use.

Prognosis

As of 2004 diabetes is a chronic and incurable disease. While stem cell research holds great promise for future therapies and potential cures, as of the early 2000s the best hope for keeping children well with diabetes and avoiding long-term complications is maintaining good blood glucose control. The landmark Diabetes Control and Complications Trial (DCCT) found that patients with type 1 diabetes who kept their blood sugar levels as close to normal as possible reduced their risk for developing diabetic eye disease by 76 percent, for diabetic kidney disease by 50 percent, and for diabetic neuropathy by 60 percent.

Diabetes and its related complications was the sixth leading cause of death in 2000. According to the National Institutes of Health, cardiovascular, or heart and blood vessel disease, is the leading cause of diabetes-related death. Uncontrolled diabetes is a leading cause of blindness, end-stage renal disease, and limb amputations. Eye problems including cataracts, glaucoma, and diabetic retinopathy also are more common in people with diabetes.

Diabetic neuropathy is the result of nerve damage caused by uncontrolled diabetes. Autonomic neuropathy affects the autonomic nervous system and can cause gastroparesis (nerve damage of the stomach), neurogenic bladder (nerve damage of the urinary bladder), and a host of other problems with involuntary functions of the nervous system.

In peripheral neuropathy (PN), nerve damage in the extremities (e.g., the legs and feet) causes numbness, pain, and burning. Diabetic foot ulcers are a particular problem since frequently the patient does not feel the pain of a blister, callous, or other minor injury. Poor blood circulation in the legs and feet contribute to delayed wound healing. The inability to sense pain along with the complications of delayed wound healing can result in minor injuries, blisters, or calluses becoming infected and difficult to treat. The most serious consequence of this condition is the potential for amputation of toes, feet, or legs due to severe infection.

Diabetic kidney disease is another common complications of diabetes. Long-term complications may include the need for kidney dialysis or a kidney transplant due to kidney failure. Diabetes is the number one cause of chronic kidney failure in America.

Children and adults with the autoimmune form of type 1 diabetes are also at greater risk for other autoimmune disorders, including thyroid disease, celiac sprue (sometimes called gluten intolerance), autoimmune hepatitis, myasthenia gravis, and pernicious anemia.

Prevention

The risk of developing type 2 diabetes may be reduced by maintaining ideal weight and exercising regularly. Both physical and emotional stress can cause increases in blood glucose levels, so getting regular immunizations and well-child check-ups, practicing good sleep and hygiene habits, encouraging emotional and social growth, and maintaining a stress-controlled lifestyle is important for children with type 1 or type 2 diabetes.

Parental concerns

Parents of children with diabetes must work with their child's teachers and school administrators to ensure that their child is able to test her blood sugars regularly, take insulin as needed, and have access to food or drink to treat a low. Someone at school should also be trained in how to administer a glucagon injection, an emergency treatment for a hypoglycemic episode when a child loses consciousness.

Section 504 of the Rehabilitation Act of 1973 enables parents to develop both a Section 504 plan (which describes a child's medical needs) and an individualized education plan (IEP) (which describes what special accommodations a child requires to address those needs). An IEP should cover such issues as blood glucose monitoring, dietary plans, and treating highs and lows. If school staff has little to no experience with diabetes, bringing in a certified diabetes educator (CDE) to offer basic training may be useful.

Children with diabetes can lead an active life and enjoy most of the activities and foods their peers do, with a few precautions to avoid blood sugar highs or lows. A certified diabetes educator that has experience working with children can help them understand the importance of regular testing as well as methods for minimizing discomfort. Diabetes summer camps, where children can learn about diabetes care in the company of peers and counselors who also live with the disease, may be useful from both a health and a social standpoint. In addition, peer support groups can sometimes help children come to terms with their diabetes.

Hypoglycemia, or low blood sugar, can be caused by too much insulin, too little food (or eating too late to coincide with the action of the insulin), alcohol consumption, or increased exercise. A child with symptoms of hypoglycemia may be hungry, cranky, confused, and tired. The patient may become sweaty and shaky. Left untreated, a child can lose consciousness or have a seizure. This condition is sometimes called an insulin reaction and should be treated by giving the patient something sweet to eat or drink like candy, juice, glucose gel, or another high sugar snack. A child who loses consciousness due to a low should never be given food or drink due to the risk of choking. In these cases, a glucagon injection should be administered and the child should be taken to the nearest emergency care facility.

While exercise can lower blood glucose levels, children with diabetes can and do excel in sports. Proper hydration, frequent testing, and a before-game or practice snack can prevent hypoglycemia. Coaches or another onsite adult should be aware of a child's medical condition and be prepared to treat a hypoglycemic attack if necessary.

The other potential danger to a child with diabetes—diabetic ketoacidosis—is uncommon and most likely to occur prior to a diagnosis. It may also happen if insulin is discontinued or if the body is under stress due to illness or injury. Ketones in the urine can be detected using dipstick tests (e.g., Ketostix), or detected using a home ketone blood monitor. Early detection facilitates early treatment and can prevent full-blown DKA.

Because the symptoms of DKA can mimic the flu, and the flu can increase blood sugar levels, a child who comes down with a flu-like illness should be monitored closely and tested regularly. An increase in insulin may also be necessary; parents of children with diabetes should talk with their pediatrician about a sick day plan for their child before they need it.

KEY TERMS

Diabetic retinopathy—A condition seen most frequently in individuals with poorly controlled diabetes mellitus where the tiny blood vessels to the retina, the tissues that sense light at the back of the eye, are damaged. This damage causes blurred vision, sudden blindness, or black spots, lines, or flashing light in the field of vision.

Glucagon—A hormone produced in the pancreas that changes glycogen, a carbohydrate stored in muscles and the liver, into glucose. It can be used to relax muscles for a procedure such as duodenography. An injectable form of glucagon is sometimes used to treat insulin shock.

Honeymoon phase—A period of time shortly following diagnosis of type 1 diabetes during which a child's need for insulin may decrease or disappear altogether. The honeymoon phase is transitional, and insulin requirements eventually increases again.

Hyperglycemia—A condition characterized by excessively high levels of glucose in the blood. It occurs when the body does not have enough insulin or cannot use the insulin it does have to turn glucose into energy.

Hypoglycemia—A condition characterized by abnormally low levels of glucose in the blood.

Insulin—A hormone or chemical produced by the pancreas that is needed by cells of the body in order to use glucose (sugar), a major source of energy for the human body.

Ketoacidosis—Usually caused by uncontrolled type I diabetes, when the body isn't able to use glucose for energy. As an alternate source of energy, fat cells are broken down, producing ketones, toxic compounds that make the blood acidic. Symptoms of ketoacidosis include excessive thirst and urination, abdominal pain, vomiting, rapid breathing, extreme tiredness, and drowsiness.

Off-label use—Prescribing a drug for a population (e.g., pediatric) or condition for which it was not originally approved by the U.S. FDA. For example, sulfonylurea drugs are not FDA approved for use in children with type 2 diabetes due to a lack of clinical studies in pediatric populations, but a physician may prescribe them in an off-label use of the drug.

Prediabetes—A precursor condition to type 2 diabetes, sometimes called impaired glucose tolerance or impaired fasting glucose. Prediabetes is clinically defined as individuals who have elevated blood glucose levels that are not diagnostic of type 2 diabetes but are above normal (for the fasting plasma glucose test, this measurement would be 100 to 125 mg/dL (5.6 to 6.9 mmol/L).

BOOKS

The American Diabetes Association Complete Guide to Diabetes, 3rd ed. Alexandria, VA: American Diabetes Association, 2002.

Brackenridge, Betty, and Richard Rubin. Sweet Kids: How to Balance Diabetes Control and Good Nutrition with Family Peace, 2nd ed. Alexandria, VA: American Diabetes Association, 2002.

Ford-Martin, Paula, with Ian Blumer. The Everything Diabetes Book. Avon, MA: Adams Media, 2004.

ORGANIZATIONS

American Diabetes Association. 1701 North Beauregard St., Alexandria, VA 22311. Web site: .

American Dietetic Association. 216 W. Jackson Blvd., Chicago, IL 60606–6995. Web site: .

Children with Diabetes. 5689 Chancery Place, Hamilton, OH 45011. Web site: .

Juvenile Diabetes Research Foundation. 120 Wall St., 19th Floor, New York, NY 10005. Web site: .

National Diabetes Information Clearinghouse. 1 Information Way, Bethesda, MD 20892–3560. Web site: .

WEB SITES

"2004 Clinical Practice Recommendations." Diabetes Care, January, 2004. Available online at (accessed December 26, 2004).

Ford-Martin, Paula. "About Diabetes" Available online at (accessed December 26, 2004).

Mendosa, David. David Mendosa's Diabetes Directory. Available online at (accessed December 26, 2004).

Trisomy 18

2011-12-12T00:00:00.000-08:00

Trisomy 18, also known as Edwards syndrome is a genetic disorder or chromosome disorder, where a person has a third copy of material from chromosome 18, instead of the usual two copies.

Although a relatively common syndrome, it is three times more common in girls than boys. The extra material interferes with normal development. It occurs in about 1 out of every 3000 live births. Unlike Down syndrome, which also is caused by a chromosomal defect, the developmental issues caused by Trisomy 18 are associated with medical complications that are more potentially life-threatening in the early months and years of life. 50% of babies who are carried to term will be stillborn, with baby boys having higher stillbirth rate than baby girls.

At birth, intensive care admissions in Neonatal units are most common for infants with Trisomy 18. Again, baby boys will experience higher mortality rates in this neonatal period than baby girls, although those with higher birth weights do better across all categories.

Some children will be able to be discharged from the hospital with home nursing support for their families. And although less than 10 percent survive to their first birthdays, some children with Trisomy 18 can enjoy many years of life with their families, reaching milestones and being involved with their community. A small number of adults (usually girls) with Trisomy 18 have and are living into their twenties and thirties, although with significant developmental delays that do not allow them to live independantly without assisted caregiving.

Symptoms include: clenched hands, crossed legs (preferred position), feet with a rounded bottom (rocker-bottom feet), low birth weight, low-set ears, mental deficiency, small head (microcephaly), small jaw (micrognathia), underdeveloped fingernails, undescended testicle and unusual shaped chest (pectus carinatum)

Parents have done nothing before or during pregnancy to cause this disorder in their child! At conception, 23 chromosomes from the father and 23 chromosomes from the mother combine to create a baby with a set of 46 chromosomes in each cell. A trisomy occurs when a baby has three #18 chromosomes instead of the normal two. This is something that happens at conception.

Are there different types of Trisomy conditions?
The most common trisomy is Trisomy 21, also known as Down syndrome, where a baby has three of the twenty-first chromosome. Trisomy 18 is the second most common trisomy and occurs when a baby has three of the eighteenth chromosome. This results in 47 chromosomes instead of the normal 46 in the affected cells. It is this extra genetic material that causes the problems associated with Trisomy 18. The third most common is Trisomy 13, also known as Patau syndrome.

While there are different types of Trisomy 18, this does not mean one is better for a child than another. With each type, there is a range of possibilities. Some children are medically fragile while others thrive; some children walk while others are confined to wheelchairs. It is hard to say how the extra chromosome will impact an individual child from the genetic diagnosis alone.

Types of Trisomy 18:

Full Trisomy 18: The most common type of Trisomy 18 (occurring in about 95% of all cases) is full Trisomy. With full Trisomy, the extra chromosome occurs in every cell in the baby's body. This type of trisomy is not hereditary. It is not due to anything the parents did or did not do—either before or during pregnancy.

Partial Trisomy 18: Partial trisomies are very rare. They occur when only part of an extra chromosome is present. Some partial Trisomy 18 syndromes may be caused by hereditary factors. Very rarely, a piece of chromosome 18 becomes attached to another chromosome before or after conception. Affected people have two copies of chromosome 18, plus a "partial" piece of extra material from chromosome 18.

Mosaic Trisomy 18: Mosaic trisomy is also very rare. It occurs when the extra chromosome is present in some (but not all) of the cells of the body. Like full Trisomy 18, mosaic Trisomy is not inherited and is a random occurrence that takes place during cell division.

What are the characteristics of Trisomy 18?
The genetic material from the extra eighteenth chromosome can cause a variety of problems with varying severity. Just as children with Down syndrome can range from mildly to severely affected, the same is true for children with Trisomy 18. This means that there is no hard and fast rule about what Trisomy 18 will mean for your child. However, statistics show that there is a high mortality rate for children with Trisomy 18 before or shortly after birth.

Signs and tests

Pregnant woman may show an unusually large uterus and extra amniotic fluid. Unusually small placenta may also be seen when the baby is born.

Physical examination of the infant may show unusual fingerprint patterns. X-rays may show a short breastbone.

Other signs include: Hole, split, or cleft in the iris, separation between the left and right side of the rectus abdominis muscle, umbilical hernia or inguinal hernia

There are often signs of congenital heart disease, such as: Atrial septal defect (ASD), patent ductus arteriosus (PDA), ventricular septal defect (VSD)

Tests may also show kidney problems, including: horseshoe kidney, hydronephrosis, polycystic kidney

Treatment

Treatment of children with Trisomy-18 is planned on a case-by-case basis. Which treatments are used depends on the patient's individual condition.

Support Groups

• Support Organization for Trisomy -18, 13 and Related Disorders (SOFT) - www.trisomy.org

• Trisomy -18 Foundation - www.trisomy18.org

Expectations

Half of infants with this condition do not survive beyond the first week of life. Some children have survived to the teenage years, but with serious medical and developmental problems.

Complications

Complications depend on the specific defects and symptoms.

Genetic counseling can help families understand the condition, the risks of inheriting it, and how to care for the patient.

Tests can be done during pregnancy to determine if the child has this syndrome.

Genetic testing is recommended for parents who have a child with this syndrome who want additional children

Craniosynostosis

2011-12-05T00:00:00.000-08:00

Jorge Posada, the famous New York Yankee catcher, and his wife Laura started the Jorge Posada Foundation. The 10-year old foundation is dedicated to raising awareness and money for Craniosynostosis. The couple’s son Jorge Luis was born with the condition. Jorge Posada Foundation: Craniosynostosis Craniosynostosis is a congenital (present at birth) defect that causes one or more sutures on a baby's head to close earlier than normal. The infant’s skull bone fuses before the brain has fully developed and grown. Sutures are connections that separate each individual skull bone. The early closing of the skull bone leads to an abnormally shaped head.

Causes, incidence, and risk factors

Although the cause of craniosynostosis is unknown, it is known that which suture is involved determines the abnormal shape of the head.

Genetics may play a role in craniosynostosis. When the hereditary form comes into play, it often occurs along with other defects that cause seizures, diminished intellectual capacity, and blindness. Genetic disorders commonly associated with craniosynostosis include Crouzon, Apert, Carpenter, Chotzen, and Pfeiffer syndromes.

However, most cases of craniosynostosis occur in a family with no history of the condition, and children with craniosynostosis are otherwise healthy and have normal intelligence.

There are different types of craniosynostosis. Sagittal synostosis (scaphocephaly) is the most common type. It affects the main (sagittal) suture on the very top of the head. The early closing forces the head to grow long and narrow, instead of wide. Babies with this type of craniosynostosis tend to have a broad forehead. It is more common in boys than girls.

Frontal plagiocephaly is the next most common form. It is the closure of one side of the suture that runs from ear to ear on the top of the head. It is more common in girls.

Metopic synostosis is a rare form of craniosynostosis that affects the suture close to the forehead. The child's head shape may be described as trigonocephaly, and the deformity may range from mild to severe.

Symptoms

Absence of the normal feeling of a "soft spot" (fontanelle) on the newborn's skull
Disappearance of the fontanelle early
A raised hard ridge along the affected sutures
Unusual head shape
Slow or no increase in the head size over time as the baby grows

Signs and tests

The doctor will feel the infant's head and perform a physical exam. A neurological exam would also help diagnose the condition. The following tests may be performed:

Measuring the width of the infant's head
X-rays of the skull
CT scan of the head

Treatment

The main treatment for craniosynostosis is surgery. Surgery is done while the baby is still an infant. The goals of surgery are:

Relieve any pressure on the brain
Make sure there is enough room in the skull to allow the brain to properly grow
Improve the appearance of the child's head

Expectations (prognosis)

How well a person does depends on how many sutures are involved and whether other defects are present. Patients who have surgery usually do well, especially those whose condition is not associated with a genetic syndrome.

Complications

Craniosynostosis results in head deformity that can be severe and permanent if it is not corrected. Increased intracranial pressure, seizures, and developmental delay can occur.

Calling your health care provider

Call your health care provider if you think your child's head has an unusual shape. A referral to a pediatric neurologist or neurosurgeon should follow.

Prevention

Be sure to bring your child to well-child visits, so your pediatrician can routinely chart the growth of your infant's head over time. This will help identify the problem early if it occurs.

Persons with hereditary craniosynostosis might consider genetic counseling.

For additional information, try these:

Cranio Kids

Cranio Surgery Support

Craniosynostosis and Plagiocephaly Support

Parents of Children with Craniosynostosis (PCC)

The Craniofacial Group - Paris, France

IT HASN’T COME SOON ENOUGH!

2011-11-28T00:00:00.000-08:00

New York autism mandate follows national trend

New York insurance companies that were not covering the screening, diagnosis and treatment for autism spectrum disorders will now be mandated to do so effective Nov. 1, 2012.

Effective for state-regulated health plans issued or renewed on or after November 1, 2012.

Requires state-regulated health plans to provide medically necessary coverage for the screening, diagnosis, and treatment of autism spectrum disorder including:

• behavioral health treatment (such as applied behavior analysis)

• pharmacy care (if the policy covers other prescription drugs)

• psychiatric care

• psychological care

• therapeutic care, including non-restorative therapy (if the policy covers therapeutic care for other conditions) provided by licensed or certified speech therapists, occupational therapists, social workers, or physical therapists

• augmentative communication devices

• any other medical care provided by a licensed health care provider

• Imposes no age caps and no visit caps that apply solely to ASD

• Provides coverage for applied behavior analysis provided or supervised by a Board Certified Behavior Analysts up to $45,000 a year; that limit will increase annually based on increases in the medical consumer price index

• Allows deductibles, co-pays, co-insurance, care management, utilization review, external appeals, and use of provider networks only in the same manner as a policy applies to coverage of other conditions

• Does not affect any obligation to provide services to an individual under an individualized family service plan (IFSP), an individualized education program (IEP), or an individualized services plan (ISP). The purpose of this bill is to require insurance coverage for services provided outside of an educational setting for services prescribed by a physician or psychologist

• Prohibits an insurance company from terminating coverage or refusing to renew, adjust, amend, issue, or execute a policy solely because the individual has been diagnosed or received treatment for autism spectrum disorders

• Applies only to state-regulated insurance plans. Self-funded plans regulated by the federal government under ERISA law can voluntarily elect to add the coverage.

Below is the law itself.

8512

2011-2012 Regular Sessions IN ASSEMBLY
June 22, 2011

SHE’S A LADY

2011-11-21T00:00:00.000-08:00

When she enters our home, her home, she enters with a smile, and a big wave. Her smile can cause me to lower the sun on a sunny day at noon.

She spends her days in her program, and her evenings and every other weekend in her home, the Shoreham ICF, but on alternate weekends she comes home to Mom and Dad.

When she sees me, her smile tells me she knows who I am, and that I will give her whatever she wants. That earns me a hug or two. Hugs are tough to come by, especially for a funny looking father! But once I get one, I remember it forever. Sometimes she is so happy she will not let go, it becomes one very long hug, and it is one I am reluctant to end myself. For all too many years, she had been tactile defensive: one could not even hold her hand. Today, if I take her out of the car, she will be the one seeking MY hand!

She started her life out pretty normal as a beautiful baby and quickly went down hill, along with any dreams her mother and I had for her. Through the years, we all struggled, working to make our lives whole, not knowing where we were going. She was in the forefront of all our efforts, and we never lost sight of her. We were fortunate to have a support group or two in her agency; they raised our hopes and calmed our fears.

Once a long time ago, we thought she would talk, but she doesn’t, she can’t, yet she can make herself understood. Her mother is her priority and her mother’s priority is her special needs daughter. My priority has become her future, where she will be and who will take care of her, and afford her respect and dignity. I think and have confidence that it will be the agency, her home, AHRC Suffolk Chapter.

Her doctors and friends and family called her retarded, developmentally disabled, and every label in between, but we called her Ellen. She will always be Ellen and she will define our family. We lost a child once and we mourned but never forgot him. Ellen we mourn every day, every moment we know that what should have been isn’t. There’s something that is very dear to my heart that goes: “Of all sad words of tongue or pen, the saddest are these: It might have been.” And so that defines every parent or sibling that relates to someone like Ellen. But that quote is haunting, it sets the stage for self-pity, and I try very hard to instead do something productive for her.

But there is something that the outside world never sees, never experiences, and never knows. That something lies in the inner being of people like my daughter. That something is awareness, awareness as to whom she belongs to, who she is, and the uplifting spirit she owns carries us through her life until we are gone.

I guess we think God can be cruel, when he is giving us a gift. That gift is in a humble being, who when opened, can benefit the whole world by what we do with the gift if only we realize it.

I have spent many hours on board business and various committees, many hours on donating time and effort with talent that God gave me. I guess I could make money on the talent, but that would be sacrilegious and non productive. I instead invest that talent and time into helping my daughter and her friends that inhabit her world.

Recently I went to a dinner/dance to celebrate the staff, the vendors and donators and volunteers that give to the agency. It was a beautiful evening, a fund-raiser in itself, but the Chief Executive Officer said something that was very true, addressing the participants who were attending the evening: “We are here tonight because of you”. How very true, and because they attended, our work is not for naught, it proves itself. My daughter’s reactions, her happiness is also proof that our efforts pay off. It may be a frustrating and long, hard road to small success, but when you add them all up, it is a beautiful bottom line.

WILLOWBROOK NO MORE

2011-11-14T00:00:00.000-08:00

There are two kinds of community residences for people with developmental disabilities in New York State. There are; the State run residences that have come under scrutiny recently, and the not-for-profit kind that are now coming into view and under scrutiny. Both have the echo of Willowbrook and the ghost of abuse that accompanies the name Willowbrook.

Out of the ashes and disappointment of Willowbrook, came the idea 36 years ago of moving people out of institutions like Willowbrook and into more family oriented community residences.

These community residences or group homes are designed to provide a home-like atmosphere and sense of stability of family, that provides people with developmental disabilities a sense of being part of something. These are particularly important when we weight the fact that some of these individuals have no family, and are indeed wards of the State.

In the recent past, there have been reports of a pattern of physical abuse in these homes, and the State has had a black eye. There is the danger that undermines the progress the field has made in the past thirty some odd years since Willowbrook.

There are 1,000 homes run by the state and staffed by union-backed employees. Over 13,000 cases of abuse have been reported, according to the New York Times! That is 13 per home!

Once a case of abuse is reported, the union takes over in the defense of the perpetrator, and what is right is blurred over by a strong union. There is no reason for that to occur, if management has strong guidelines that work along with the unions to help prevent abuse. Civil service exams need to be re-examined and guidelines put into place to protect the very people they wish to serve.

On the other side is the not-for-profits, which pay below the scale that the state paid employee gets. They are paid a wage that is equivalent to what someone in Burger King or MacDonald’s would receive for less hours and physical strain. THIS NATURALLY LEADS TO HIGH TURNOVER RATE FOR THE NOT-FOR-PROFITS, leading to unsettledness in the group homes. 64% of all group home residents are in not-for-profit beds! What would be the costs to the state if the not-for-profits went out of business?

Parity is a problem, and getting the money to pay adequately is almost guaranteed not to happen in the near future from the State. Professional staff training is needed to go along with fingerprinting and background checks, to insure the residents and the not-for-profit agencies are getting the best people possible.

Not-for-profit agency’s cannot deal with union wages, and therefore lose many direct care people because of the lure of better paying jobs on the outside.

There is no strong rule of what constitutes physical abuse, and a zero-tolerance is quickly becoming the undoing of the agencies, and the care rendered by some faithful, dutiful caretakers who may or may not have had a circumstance beyond their control occur!

If for instance someone under the care of a seasoned caretaker who has demonstrated only the best of intentions, has dedicated him/herself to care of that individual has a momentary lapse and is reported, the person reported, in spite of the years of dedication is fired, just as if they were incompetent, abusive willfully and deliberately. That is not fair. That cost the home someone of value.

So New York State Governor Andrew Cuomo has called for a overhaul of the system, appointing Clarence Sundram ‘Special Advocate For Vulnerable Persons, along with a new commissioner of OPWDD.

Clarence J. Sundram, JD, is a nationally recognized expert on conditions in institutions and community programs for persons with mental disabilities. He served as the Special Master in class action lawsuits in Maine and Washington, DC protecting the rights of individuals with mental disabilities. He presided over the Board of Directors of Mental Disability Rights International, a non-governmental agency that advocates for people with mental disabilities worldwide.

“For 20 years, he served as the founding Chairman of the New York State Commission on Quality of Care for the Mentally Disabled, an independent state oversight agency charged with advising the governor and legislature, investigating deaths, child abuse, patient abuse, and financial fraud and abuse in programs serving persons with mental disabilities. (www.cqc.state.ny.us) Mr. Sundram has also served as Vice Chairman of the New York State Developmental Disabilities Planning Council, and as a member of the Board of Directors of the National Association of Protection & Advocacy Agencies.

Mr. Sundram has also served by appointment as a member of court monitoring bodies in several landmark class action cases involving institutional reforms, and as a Neutral Fact-Finder and Expert Witness. He has consulted in over 20 states and for the US Department of Justice on issues of protection from abuse, neglect and exploitation; investigations; restraint and seclusion; and Quality Assurance and risk management. He has developed innovative methods for exit planning and certification of compliance in long-standing class action lawsuits involving the rights of persons with mental retardation, and performed the final compliance evaluation in the landmark Wyatt litigation in Alablma.

He has testified by invitation before both Houses of Congress and before state legislative committees regarding legislation dealing with abuse, neglect and exploitation. He has published numerous articles in legal and other professional journals, and is a frequent speaker at national conferences. He has appeared on such programs as Nightline, 48 Hours and The CBS Evening News. He has received several awards in recognition of his public service, including legislative resolutions by the New York State Senate and Assembly; Distinguished Public Service Awards from the Nelson A. Rockefeller College of the University of Albany and from the New York State Association of Rehabilitation Facilities, Human Rights Award from the American Psychosocial Rehabilitation Association; a Special Award from the American Association on Mental Retardation and the Humanitarian Award from the New York City Chapter of the Association for Retarded Children.”

Recently, this writer was fortunate to hear him address the NYSARC Board of Governor’s convention in Albany on October 22, 2011. His address was most informative and his reasoning compelling. He brought out years of experience to his remarks and left me with the sense of a good man for a good cause.

Abused and Used In State Care, 1,200 Deaths and Few Answers

2011-11-07T00:00:00.000-08:00

Yesterday in the New York Times, an article was published about the care given by both state run and not for profit agencies. The article is truthful, insightful and tries to do something we as parents and siblings of children and adults with disabilities all strive for: protection of those people with developmental disabilities. It is an expose’ and an alert to those of us who pay taxes, have children and siblings in residences for people with disabilities.

“One in six of all deaths in state and privately run homes, or more than 1,200 in the past decade, have been attributed to either unnatural or unknown causes, according to data obtained by The New York Times that has never been released. “

Read the New York Times article

In every case the NY Times pointed out, it is clearly the responsibility of the agency to put into effect and to effectively carry out the methods and policies that give the most protection.

There are some issues I would like to bring to the forefront however, that have been nagging me as a parent, as an advocate and as an active member of the AHRC Suffolk Chapter and member of the Board of Governors and delegate Assembly to NYSARC’s Board of conventions and regional meetings. I take into account my concern also as co-chair of the Guardianship Committee.

Union representation.

It is implied in the Times article that in the case of state-run homes, when incidents occur that require investigation. “At state-run homes, it is also difficult to take action against caregivers, who are represented by unions that contest disciplinary measures.“

The unions are fine for representing the individual workers that need representation, even in this day and age. But they get in the way. As a parent and advocate, the very idea that someone who is and should be held responsible for an incident involving a fragile population such as ours is allowed the shield of a union in contesting disciplinary measures that should be invoked. Further more, it seems to diminish the scope and severity of what has occurred! That unions would and could strike and leave a population even more vulnerable frightens me.

Parity

State-run residences are staffed by people that are paid on a larger scale for their services due to union representation. They are no more qualified than the people hired by not-for-profit agencies. One of the issues that we face as not-for-profit is that we cannot secure staff. Many homes are left under staffed and can’t be staffed because we can’t afford to pay them enough money. We can try to supplement salaries with benefits, but how do you do that with part-time workers? Where does the money come from?

Secondly, and most importantly is the quality of care provided by some of these unskilled staff. There are many people that work for the low wages we offer who are truly dedicated, and do it for reasons that escape me since the work is so hard, but they come everyday doing their jobs with great care and love for those they serve. Not all are like that. Some staff are in transit from one job to another comes along with better pay. My agency has lost many people who were dedicated that had to leave the field for more money elsewhere, either in another field or just a better paying agency. How can we trust our people with that kind of help? How does the State allow that to happen? How can the State audit any program, make a demand, cite the program and issue warnings, consequences and make the rules, but will walk away from this key issue!

Quality of Care

Since we cater to such a vulnerable population, I would think that we would need to find the best care possible. I would think the overseers of the care for people with developmental disabilities would require the best of skilled well-trained professionals. If you go into a nursing home, there you see professionals who stay in their jobs for the most part due to decent training and salaries. They are monitored with cameras, policies and governed by the state. Those in their care are able to speak out and demand good care and for the most part will find an authority or advocate that will right the course of a bad way. Yet we put into place in not-for-profit homes people that are not all that qualified to handle fragile people. There should be mandatory training in how to work with and help our population. Training staff in fire drills in the middle of the night, teaching staff about how to prepare a plate of food for choking victims, what diced or chopped or creamed looks like. What foods should be avoided altogether.

Staffing issues don’t stop in the kitchen. How do we deal with overnight help that is insufficient to monitor the residents? Do we want undermanned residences that have distractions for staff that impact the quality of care and the safety of the residents?

I’m proud to say that the agency my daughter is part of, AHRC Suffolk Chapter, does those things. Often I attend her annual and semi-annual meeting where all the different program representatives come together ad discuss her life, both at the residence and her day program. All her medical records and daily progress is reviewed. Often revisions are put into place that will allow and take into account her progress or lack of.

With ‘Quality of Care’ goes responsibility. It comes from not only staff, but also parents, siblings and guardians of people with disabilities. But it must go beyond even that. It must ultimately lie with those who set the rules, the State.

Not-for –profit agencies relieve the State of a huge burden. If these agencies relinquished their care to the State, what would happen? The agencies that cater to the developmentally disabled follow certain guidelines laid down by the State. If they are not followed, they lose their funding from the State and probably their charter to operate. Mandates that are issued by the state are often done without forethought. For instance, I attended an annual meeting for my daughter where staff was required to teach or show her how to identify money, make change and determine its value. My daughter is categorized as “profoundly retarded”. The State mandated that staff take the time and do that! Who is responsible here for Ellen’s lack of awareness about money? The Sate? The Agency? This is the kind of insanity we are dealing with! We wasted taxpayer’s money, agency money and endure the poor oversight of the State! They the State need to do a much better job on their end. It isn’t always the agency that lies at fault.

You want more staff at certain times of the day or evening, and then provide the funds to pay for it, and make it reasonable to hire help. You want better quality of care? Set the ground rules, make them universal and allow both State and Not-for-profits to take part in it. Don’t make rules and then tie the hands of agencies while you run away from your own responsibilities.

The New York Times article is good to have. It exposes culpability in all its forms from all sides. Those in charge at the State level should look more at responsibility to those the not-for-profits serve, and give the agency meaningful assistance, and not just guidelines that are not always practical.

In the Times article yesterday, Marc Brandt was called a "Saint" by someone who knows him. The man has always demonstrated to me the best interest of those we serve. I don't always agree with him, but I do know that he is patient, understanding and dealing with the State of New York. Maybe he is a saint?

ANGELMAN SYNDROME AND SOCIAL SECURITY's CAL

2011-10-31T00:00:00.000-07:00

Below is an email I received from the Social Security website about some good news!

On Thursday, October 13, 2011, Social Security announced the inclusion of thirteen new conditions to be included in the Compassionate Allowances (CAL) program effective December 2011. Angelman syndrome is one of the thirteen new conditions named in this announcement!

Compassionate Allowances are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to quickly target the most obviously disabled individuals for allowances based on objective medical information that can be obtained quickly.

CAL conditions are developed as a result of information received at public outreach hearings, comments received from the Social Security and Disability Determination Service communities, counsel of medical and scientific experts, and research with the National Institutes of Health (NIH). Also, conditions that are most likely to meet the current definition of disability are considered.

CALs are designed to expedite the process for determining eligibility for Social Security.

Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards.

Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to quickly target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly.

CAL conditions are developed as a result of information received at public outreach hearings, comments received from the Social Security and Disability Determination Service communities, counsel of medical and scientific experts, and our research with the National Institutes of Health (NIH). Also, we considered which conditions are most likely to meet our current definition of disability.

Commissioner Astrue has held seven Compassionate Allowances public outreach hearings. The hearings were on rare diseases, cancers, traumatic brain injury (TBI) and stroke, early-onset Alzheimer's disease and related dementias, schizophrenia, cardiovascular disease and multiple organ transplants and autoimmune diseases.

On July 14, 2011, Commissioner Astrue held an event at the Dirksen Senate Office Building, room 106, at 10:00 a.m. in Washington D.C. to announce the addition of 12 new conditions to the Compassionate Allowances list of conditions. This addition brings the number of Compassionate Allowances conditions to 100.

2011-10-24T00:00:00.000-07:00

The following is from Autism Speaks.

Are you pregnant or do you have an infant under the age of 12 months?
The Infant Brain Imaging Study (IBIS) at the Center for Autism Research, The Children’s Hospital of Philadelphia is looking for participants!

Autism Speaks provided $5 million to expand and link two large-scale, multi-site studies of more than 2000 infant siblings of children with autism, who are at higher genetic risk for developing the disorder. This unprecedented research effort will investigate genetic and environmental risk factors for autism from pre-natal development through early childhood. Read more about the Infant Brain Imaging Study (IBIS) Network and the Early Autism Risk Longitudinal Investigation projects here.

We are proud to be able to fund this research – and couldn’t do that without every dollar raised through our Walk program, special events and donations. Thank you for your support.

Twin and family studies have shown that younger brothers and sisters of children with autism are at a higher risk of developing autism than those children who do not have relatives with this condition. Information gained about early brain development in children with autism may improve methods of early detection and intervention for infants who may be at risk for developing autism. Earlier identification and treatment may lead to better outcomes for these young children and their families.

At the Center for Autism Research, The Children’s Hospital of Philadelphia, we aim to identify very early brain features that may be characteristic of infants at risk for autism. To do this, we are actively seeking to enroll families who have a child with an autism spectrum disorder and an infant sibling 12 months old or younger for the Infant Brain Imaging Study (IBIS). We are also enrolling families who have typically developing infants 6 months old or younger and who have a typically developing older sibling. Developmental evaluations and MRI scans of your infant’s brain will be completed at 6 (if applicable), 12, and 24 months of age. Compensation for participation is also provided, and travel arrangements can be made for families traveling from further distances.

To learn more about participating in this study, please contact our study coordinator at 1-866-570-6524 (toll free) or autism@email.chop.edu.

AUTISM TOOLS

2011-10-17T00:00:00.000-07:00

Know children with: Autism, Asperger Syndrome, Pervasive Developmental Delay (PDD), Sensory Integration Disorder, and other related behaviors? Just how many tools do you or they have to deal with the different aspects of their disorder?

A variety of resources including lesson plans, games, group activities, sensory integration ideas, forums, and other valuable tools and information to help teach children are available. Here is some ideas for your use.

Time Management:

You have the visuals in place. Your child is able to perform a certain task such as getting ready for school. But it seems to take forever to get the task completed. This idea can help motivate your child to be faster and get the task done.

Instructions:

Get a timer and tell your child that you are going to play a game called "Beat the clock."
Set the timer for a certain amount of time and tell your child that you are going to see if he can complete the task (such as getting ready for school) before the time runs out.
Do this consistently over a few weeks to help your child learn how to do the routine quickly.
You can time how fast your child can do the task and write it down each day. He or she can then compete against himself or herself to get a better time each day.
For some children they might need an extra motivator to keep trying to beat the clock. Select a favorite toy, fidget, treat or story that the child can earn each time they beat the clock.

Motivator Ideas:

Getting ready for school. Choice of fidget or toy to use on the bus. Beat for a week and get to choose where the family eats out.
Getting ready for bed. Choose the story to be read or stay up for 5 extra minutes.
Completing chores. Treat or sensory activity after work is done, or play outside on bike or scooter.
Completing homework. Extra video game time.

Skills Developed:

Fine motor

Musical Cotton Balls:

Materials:

Clothespins

Cotton Balls

Music

Instructions:

Sit together in a circle. Give each person a cotton ball and clothespin. The goal of this game is to use the clothespins to pass the cotton balls to the right and not have them piled up in front of you when the music stops. You can choose to prepare music ahead of time that has pauses recorded into it or simply pause it periodically yourself. Make sure the children know that they have to pick up the cotton ball and drop it, not just "slide" the cotton ball to the next person. Give everyone a cotton ball again and start the music and continue as often as you want.

Variations:

If you are playing with 1 child, you may want to just use one cotton ball and see who has it when the music stops.
After a few times to the right, switch and have the passing go left.

Materials Durability:

In order to insure durability of materials, paste them on construction paper, cardstock or tag board and then laminate them. This also allows the child to use a marker to mark off each step as completed. However, you may not always have access to a lamination machine. Here are three popular alternatives to lamination:

Packing tape: Paste the materials on stiff paper then use strips of clear packing tape to cover the material. The tape helps to stiffen the material and provides you a wipe off surface.
Plastic sheet protectors: Place the material inside the protectors and trim the material to fit. Tape the open ends closed.
Clear contact paper: Carefully place the materials face down on a sheet of clear contact paper then trim around the material and its ready to use. Some people prefer to cover front and back for added durability

Social Development

Higher functioning children seem to start out well then fairly quickly fall behind as they progress through the primary grades. This pattern of academic development coincides with the children's pattern of social development, a pattern with increasing deficit as the child ages. It has become apparent that the children's academic development is tied to their social development and by focusing on the development of social thinking these children can be helped to achieve far more than with a focus on academics alone.

The development pattern looks something like this:

Kindergarten

Children in the spectrum do fairly well as the curriculum is concrete and easily understood.
They learn to read easily and some appear to be avid readers as they read everything in sight.
They learn to write their letters but they look a little sloppy.
They catch onto math quickly and enjoy the patterns in numbers.
They love science, as it is hands on and engaging.
They participate in parallel play but do not engage other students. Other students occasionally attempt to engage them in cooperative play.

First Grade

Children in the spectrum are generally working at grade level while the curriculum remains concrete.
It soon becomes clear that even though they can read big words, they do not understand a lot of what they are reading.
Writing becomes a tiresome chore as they struggle with the mechanics of properly forming their letters and giving them the correct spatial orientation on the line.
When they are expected to begin writing short stories they tend to focus repeatedly on the same topic and write stories that make little sense to other readers.
Their math skills remain strong but they often need help understanding the directions and are easily frustrated when they are not allowed to do the worksheet their way.
They still like science and social studies and tend to enjoy opportunities to make drawings based on their findings. Inappropriate behaviors are starting to show up more frequently and there is a lot more resistance to complete work or comply with the teacher's requests.
They continue to participate in parallel play without engaging other students. Other students make fewer attempts to engage them in cooperative play.

Second Grade

Children in the spectrum begin to perform below grade level in some areas.
As they fall farther behind on reading comprehension they start to lose interest in reading because they cannot understand what they have read.
They begin to slip farther behind in their writing and often exhibit behavior issues when asked to write. Many will refuse to even make an attempt at writing.
Math skills are still strong but they find it increasingly more difficult to understand the language of math causing them become confused and upset.
Science and social studies can be fun still, but now they are expected to write their findings and may start to resist doing the work.
They begin to be loners as other children have given up on engaging them in cooperative play.

Third Grade

Children in the spectrum often fall a full grade behind as the curriculum becomes increasingly abstract. School becomes a lot of work and more negative behaviors erupt.
They have fallen significantly behind in reading and cannot get important information from most grade level texts.
They are unable to organize their writing and are still struggling with forming their letters.
Every subject requires them to write including math where they are now required to write what they were thinking when solving the problem.
They have the added challenge of understanding math story problems, which is particularly difficult since their reading comprehension is so far behind.
They still enjoy the hands on activities in science and social stories but refuse to do the work as it involves a significant amount of writing.
They start wanting to play with other children but are often rejected and teased because they are viewed as quirky and strange.

As the grades progress they become more and more frustrated and anxiety increases as their academics steadily fall farther behind. They don't understand why they are struggling so much academically and they begin feeling lonely because they don't fit in socially.

What is causing this pattern that seems so similar with children within the autism spectrum? According to the DSM-IV (Diagnostic Statistical Manual of Mental Disorders, Fourth Edition these children have the following diagnoses criterion:

marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction;
failure to develop peer relationships appropriate to developmental level;
a lack of spontaneous seeking to share enjoyment, interests or achievement with other people;
lack of social or emotional reciprocity.

In other words they have significant lack in social abilities. These social deficits reach well beyond forgetting to say hello to someone or use please and thank you. They reflect a difference in the way these children think about and view the world around them. They don't know how to think socially and this lack in social thinking can have a serious affect on their academic skills.

We can use Michelle G. Winner's ILAUGH model of social thinking to better understand how these children think and the impact their deficit in social cognition can have on their academics:

I = Initiation. This is the ability to ask for help in the classroom, ask to play with friends or initiate help from family members at home. For many years my son would become upset because he was thirsty but nobody was getting him a drink. He would be throwing a fit and when asked what was wrong he would say, "I thirsty." He never thought to ask for help getting a drink of water. In the classroom a child may not understand how to do an assignment and he will sit there never thinking to ask the teacher for help.

L = Listening With Eyes and Brain. Most children within the autism spectrum have auditory input difficulties. They don't fully understand what is being said. Listening is also more than just hearing information through our ears. It is using the whole body to understand the verbal and non-verbal cues of the person who is talking. It is using the eyes to look for the clues and piecing the information together. Without looking at the speaker the child will most likely not understand what he is suppose to do or notice when taking a crayon off a desk that the owner of the crayon is visibly upset by the action.

A = Abstract and Inferential Language/communication: Children within the spectrum tend to not understand that language is complex and is not always meant for literal interpretation. Our school district has recently adopted a new math curriculum, which is very heavy in math language. It also uses some language that can be confusing to the literal thinker. I have had several of my students and my daughter become very upset because the instructions say to "ring" the right answer. To them a ring is an object you wear on your finger. This simple direction has caused much chaos as the children refuse to do the work because they don't understand the directions. Often, even after I explain it is the same as saying "circle," their minds refuse to accept it. As academics progress from grade to grade the concepts taught become more abstract. Students have to be able to make guesses about the meanings of words and ideas and this is very hard for these children. Math problems become harder to understand and reading comprehension becomes more difficult as language used to relate ideas and thoughts becomes more abstract.

U = Understanding Perspective: According to Michelle G. Winner "This is the ability to understand the emotions, thoughts, beliefs, prior knowledge, motives and intentions of yourself as well as others. We generally acquire this skill in our preschool years intuitively." This is one of the biggest factors impacting a child's academic success. In order to understand what you have read, you need to be able to put yourself in the character's place and understand how the character is feeling and thinking. Children within the autism spectrum tend to struggle with this. They struggle to understand how others may feel or react in different situations. They are unable to read between the lines. So when they read a story about a girl who lost a race and they are asked, "How did the girl feel when she lost the race?" they are confused wondering how they should know. None of the words in the story said how she felt. The story only said that she walked home slowly. They lack the ability to make text connections to experiences they have had in life. For writing you need to be able to understand what information the reader will need. A child's writing might end up reading as, "I had a fun time there. I liked my ice cream. I played the game." They are then upset that you have no idea where they went, what flavor ice cream they had and what game they played. They can see the pictures in their head and they don't understand why you don't see the pictures too.

G=Gestalt Processing/Getting The Big Picture: Information comes in bits and pieces that have to be put together like a puzzle in order to see the whole picture. These children struggle to put the puzzle together and focus instead on individual pieces. Recently I was working on reading comprehension with a student and I asked him to tell me what the story was about. He told me all about the dog in the pictures and what the dog did throughout the book. However, the story had been about a boy whose mom would go out of town and the good things he would get to do and the things he missed while she was gone. This student focused on the dog and missed the whole meaning of the story. The dog had never been mentioned; it was just in the pictures. This is also where organizational skills become involved. You have to be able to collect information and organize it into a whole. Children within the autism spectrum find it very difficult to organizing their writing. They will write a sentence, then think of a new fact or idea and write it down, and continue on to create a written piece that makes no sense. For example I had one student who, when asked to write a story wrote, "I like basketball. I love my mom. My sister goes, Ahhh! I love my dad. Pizza is good."

H= Humor and Human Relatedness: This can be represented in several ways. Some are so anxious about schoolwork and social interactions that they require perfection of themselves. They are very serious, they do not laugh and when they make even a small mistake they have a melt down. Others really want to fit in and will try to use humor at school but are unsuccessful. My daughter was once told a joke that went like this. "Why is 6 afraid of 7? Because 7 8 (ate) 9." She laughed hysterically and it was obvious that her laugh was forced. I later talked to her to see if she understood the joke and she hadn't. She just wanted to fit in so she laughed because she knew that is what you do when someone tells a joke. Most of my students have a great sense of humor (even if sometimes I don't understand them) and allow others to make mistakes. They enjoy pointing out my errors and have humor with me as I laugh it off and fix the issue. However, the humor stops when they make the mistake in their own schoolwork. All of a sudden they become agitated and refuse to believe that I might be right when I mention that they forgot to add a period at the end of a sentence. Which then leads to a refusal to do their work.

As we have seen, an understanding of the ILAUGH model helps us to understand why children within the autism spectrum struggle so much with academic challenges. Social interaction is not just important when they play with others, but in varying degrees it impacts every moment of the day and is a key factor in the academic success of a child.

The best way to help children in the autism spectrum achieve academic success is to focus on the development of social thinking skills. There are many things that can be done both at home and in a classroom setting. When reading a story talk about how the characters are feeling, make predictions as to what will happen next, point out the direction of the eyes to help the child make "smart" guesses about what is going on and who is thinking of who. Work on sequencing skills to help them learn to organize the information they got from reading. For writing graphic organizers are key. Model writing and create interactive writing pieces together so the child can start to learn what information is needed. Work on specific social-cognitive skills such as learning what emotions are, what it means to think of others, learning to make "smart" guesses and create structured learning social environments. These techniques and many others can help the children learn social thinking.

Most of the content on this website has been designed specifically for teaching social thinking skills to children with Autism and Asperger syndrome and all have been used successfully with both my own children and my students. I have seen great improvement in the children's social capabilities as well as in their academic success. It should be noted however, that none of these materials are intended to provide a quick fix. Improvements can be dramatic but it often starts slowly with a lot of resistance from the children. The greatest successes have been seen in children who have had a year or more of consistent social training in both group and individual settings. The task is not an easy one but with patience and perseverance it can be extremely rewarding for both the child and the teacher.

For more information on the link between social thinking and academics you can read Michelle G. Winner's articles http://www.socialthinking.com/http://www.socialthinking.comon www.socialthinking.comon her website.

Michelle G. Winner is a speech language pathologist in private practice in San Jose, California. She has written two books: Inside Out: What Makes The Person With Social Cognitive Deficits Tick? (2000) And Thinking About You Thinking About Me (2002). A training and therapy video/DVD out called: Social Thinking Across the Home and School Day is now available. She runs the Michelle G. Winner Center for Social Thinking and travels around the nation and world providing workshops on this topic. Michelle has consulted with the Orange County Department of Education's S.U.C.S.E.S.S. Project for the last 4 years. For more information visit her website: http://www.socialthinking.comwww.socialthinking.com

9/11/01

2011-10-10T00:00:00.000-07:00

Below is a story of reminiscence, that includes people we don't think about as having the trauma or understanding that we feel. Laura Laurent is a special person, someone I wish you could all know. I happen to be fortunate to know her, having met her in California back in 2007, here is her remembrance.

by Laura Laurent-Varava on Monday, September 12, 2011

Ten years ago today I was living with my parents – sort of aimless and not really sure what to do with myself. I was working part time at a record store and as a caregiver for people with disabilities. On the night of September 10. 2001, I stayed up late listening to the new Bob Dylan record – Love and Theft - that was to come out the next day (got it at midnight). On the morning of September 11, I drove to take care of Pearl, an elderly woman who was about 4’6”. I was trying to teach her how to read, but mostly we colored pictures and took long walks together. That morning I was greeted by her sister, Beatrice, who opened the door for me, wide-eyed and shaky, shouting, “It’s the end of the world!” as she pulled me in to see the television set, just as the towers fell.

Pearl and I walked around the block several times in silence. I usually tried to talk to her about what I noticed in the neighborhood – just making conversation – though she hadn’t spoken to anyone in over 65 years, after she had witnessed her mother being killed when she was in 5th grade. I don’t think I was able to muster up any words that day, but I’m not sure that she thought much of it.

Later that day I drove to see Sajiv, an 11-year old boy with severe autism. I remember watching the parents up and down his block waiting for their kids to get off the school bus, running to greet them, flags already flying at half-mast. Sajiv clapped and laughed for the school bus, unaware of the terror, not knowing why the neighborhood kids were home from school early. I remember sitting in his living room, completely numb, and watching as he excitedly pointed at the television screen, the colors and sounds, flipping quickly with each channel showing the same horrible images – but he didn’t know they were horrible. He laughed and clapped each time the towers fell, and he had no idea what any of it meant. I sat there wondering what it was like to be him – to not know what this was. It seemed like he was the only in the world that didn’t know – he was so innocent.

I have a hard time believing that was ten years ago. Pearl is probably not living anymore, and Sajiv is a man in his twenties. The anniversary of that day brings me back to them. I didn’t know what to say to them then, and I still don’t know what to say. Sometimes all you can do about something is cry.

NAVIGATING LIFE AFTER THE DEATH OF A CHILD

2011-10-03T00:00:00.000-07:00

As I stepped off the curb on the corner of HOPE and DESPAIR, I found myself in a traffic jamb of laughter, happiness, cheerfulness, and joyfully, contented pedestrians.

Hope Street is that the reality will have a different ending. Many parents are estranged from their children. As long as they are alive, there is hope. When there is death all hope is gone. Except that you come to a place where you realize that you may go forward and bring the memory of that child with you.

Despair Street is losing the sensibility, a feeling, and a palpable sensation at the core of our being. We have suffered the biggest lose of all. With this loss, we seem to have lost it all.

Very shortly afterwards on my journey, I came to a bridge. It was the bridge that connected lives the ‘life before the death’ with the ‘life after death’. That bridge is very heavily traveled.

I recognize similar faces, like-minded parents, and bereaved parents on the Boulevard of Courage. Who would have ventured to indulge in the sort of camaraderie, which is kept up between us? Not me. And no one is ever invited here. We call ourselves The Compassionate Friends. We not only see through each others eyes, we feel through each others hearts. The lives of our children are placed in the memory of their living parents.

We meet regularly at the park called Homeland, a place that is full of personal memories. We celebrate our memories of our children. We gather, we share, we cry, and yes we laugh, too. We know the true meaning of a rainbow. We hear the messages from our children when a butterfly comes to us to say life is ever changing. Our balloon releases are an act of endearing love to our child on Quite Avenue. We write messages filled with love to our children and release them to heavens for their eyes-only.

So, I have learned, the very hard way, that life only goes in one direction. That is forward. Wouldn't it be nice to have a STOP or PAUSE or REPLAY?

Russell William ~ forever 35

Pamela Rae

Understanding the 1115 Waiver

2011-09-26T00:00:00.000-07:00

1115 Waiver – Section 1115 of the federal Social Security Act allows the Secretary of HHS to enter into research and demonstration projects with States that allows for the testing of “substantial new ideas of policy merit.” Under this section of law the Secretary has vast discretion to give States a waiver of almost any section of Medicaid law or regulation to accomplish its objectives. Waivers are granted for a 5-year period and may be renewed.
Further info:

Safety Net Pool – This is a term frequently used in connection with 1115 waivers wherein the federal government agrees to provide federal Medicaid revenue to cover costs delineated by the State in its “safety net pool.” Another term used in this regard is CNOM or Costs Not Otherwise Matchable. In the case of New York’s OPWDD proposal, the assumption is that the State will define a Safety Net Pool that will be used to continue to capture the revenue that is now associated with DC and other State Operated Medicaid billings that generate Medicaid revenue in excess of the costs associated with the delivery of those services.

Capitation Financing – This is a method of payment for health services in which a health care provider is paid a fixed amount per enrollee to cover a defined scope of services for a defined population set (aka covered lives) for a defined period of time, regardless of actual number or nature services provided. In recent meetings of the fiscal design team, OPWDD has stated that capitation financing will be the method of reimbursement that will be used in the 1115 Waiver.

Full Capitation/Partial Capitation – Capitated payments paid through managed care may cover the full spectrum of eligible services or only a subset of services. Typically in managed health care, partial capitation contracts cover all medical services except hospitalization and certain medical specialty services. Conceivably, in the OPWDD 1115 waiver a partial capitation contract could cover all or part of the long-term care services but not include any acute or primary health care.

Risk based payments – Capitation financing implies risk based reimbursement. The payment to a provider is expected to cover all needed services. The provider takes on the financial risk should more service be required than is covered in the payment. Various strategies can be employed by the provider to manage the amount of risk. Federal regulations impose certain requirements for financial solvency and reserves on any Medicaid entity that operates as a Managed Care Organization that accepts full or comprehensive risk.

PMPM – Per Member Per Month is the typical periodicity of payment in managed care.

Provider Network – A managed care organization contracts with specific providers to deliver services to its members. These contractors are referred to as the MCO’s network. Under Medicaid rules, MCOs must contract with sufficient numbers of providers to assure access to services on par with services provided to those who are not in managed care. MCOs may pay its contractors in a variety of different ways so long as they can attract enough providers and the services provided are of sufficient quality. In the recent Q&A document that OPWDD sent to CMS, providers in managed care networks were referred to as “down-stream providers.”

Individualized Budgets – This method of financing is an alternative to fee for services billing in which an individual is allocated a fixed budget amount that is then made available through a fiscal intermediary agent to purchase supports and services for the individual consistent with an approved plan of care (ISP). The amount of the individual budget is typically negotiated but based on an assessment and allocated relative to what a similar person might cost in the fee-for-service environment. New York OPWDD has employed individual budgets through its HCBS Waiver under Consolidated Supports and Services (CSS).

Global Budgets – A global budget is a fixed maximum expenditure, typically set by government, for a defined set of services. The size of the budget may be set by an assessment of projected needs or determined relative to an objective metric (a percentage of payments made in a prior period). In the health care field, institutional providers such as hospitals may be given individual budgets each year and be required to work within them.

PACE – Programs of All-inclusive Care for the Elderly is a federally recognized program (Medicare and Medicaid) that provides community-based cared and services to people who would otherwise need nursing home care. Participants must be at least 55 years of age and meet SNF level of care. PACE programs serve specific geographic areas. This is a full risk capitated program and the PACE program receives a Medicare and a Medicaid per member per month reimbursement that is inclusive of all services. There are 7 PACE programs in NY State serving some 3660 people. The typical core of services is an adult day care program supplemented with personal care, home care services and transportation. The PACE provider typically contracts out all of the associated acute care, hospitalization, and nursing home services. OPWDD (in response to CMS questions) has stated that the intent of the 1115 waiver is to “initiate a PACE-like program model that incorporates the full spectrum of medical and developmental disability services into a single, integrated comprehensive delivery system which integrates Medicare and Medicaid financing.

Dual Eligibles / Integrating Care for Dual Eligible Individuals – Individuals who are eligible for both Medicaid and Medicare are a significant focus of both federal and state policy makers as a potential area to achieve cost saving and improved health outcomes. The number of people with developmental disabilities who are dual eligible has grown significantly in recent years and is estimated to include approximately 60% of all adults served by OPWDD. Recently federal CMS opened a separate Office for Medicare-Medicaid Coordination. That office awarded contracts to 15 states including New York for dual eligible demonstration projects. Under the State Demonstrations to Integrate Care for Dual Eligible Individuals, selected states will be awarded up to $1 million to design strategies for implementing person-centered models that fully coordinate primary, acute, behavioral and long-term supports and services for dual eligible individuals. After federal review of the proposals, CMS will work with states to implement the plans that hold the most promise.

NYS Managed Long Term Care Program – The NYS Medicaid Reform Task Force report included a provision which requires enrollment of individuals 21 and older who require community based long term care services for more than 120 days in a MLTCP or other care coordination model. Currently DOH has three different approaches for accomplishing the mandate; PACE programs, managed long-term care partial capitation contracts, and Medicaid Advantage Plans.

Health Home – The federal Affordable Care Act included provisions for establishing enhanced Medicaid federal financial participation for certain health care services that are delivered consistent with the precepts of a Health Home. NYS has filed a Medicaid State Plan Amendment to establish health Homes. Health home services support the provision of coordinated, comprehensive medical and behavioral health care to patients with chronic conditions through care coordination and integration that assures access to appropriate services, improves health outcomes, reduces preventable hospitalizations and emergency room visits, promotes use of Health Information Technology (HIT) and, avoids unnecessary care.

Accountable Care Organization (ACO) is a model that was formally introduced into health reform through the Patient Protection and Affordable Care Act, and will officially become part of Medicare through the Medicare Shared Savings program in 2012. An ACO is group of health care providers who give coordinated care and chronic disease management, and thereby improve the quality of care people get. The organization’s payment is tied to achieving health care quality goals and outcomes that result in cost savings. ACOs create incentives for health care providers to work together to treat an individual across care settings – including doctor’s offices, hospitals, and long-term care facilities. Because providers receive a share of the savings beyond a predetermined threshold level, steps that achieve better outcomes with less resource use – such as care coordination services and wellness programs – result in greater provider reimbursement.

Quality Improvement, Continuous Quality Improvement – These terms imply an approach to quality management that goes beyond basic standards compliance and looks at internal systems that are built into programs that result in quality outcomes. Critical to most QI efforts is careful measurement and feedback loops that lead to management intervention and program improvement.

National Core Indicators Project – Core indicators are being used in many states as uniform approach to measuring system outcomes in State developmental disabilities systems. The project establishing Core Indicators was initiated in 1997 by the National Association of State Directors of Developmental Disability Services with assistance from Human Services Research Institute. NCI is being used in 25 states. The NCI framework includes approximately 100 performance and outcome indicators organized across five broad domains: Individual Outcomes, Family Outcomes, Health Welfare & Rights, Staff Stability & Competency, and System Performance. New York has been using NCI since 2007.

COMPASS is an OPWDD initiative that recognizes provider agencies that have progressed beyond minimal regulatory compliance, and achieved excellence in service delivery. COMPASS agencies engage their entire organization by encouraging Board members, management, staff, and service recipients to work together in a person-centered environment with the goal of promoting and achieving valued outcomes for people. Upon admission, DQM suspends all routine survey activity at the agency, (with the exception of ICF surveys and Willowbrook visits.) The new COMPASS agency assumes the task of surveying its own programs to determine regulatory compliance. Thereafter, new COMPASS agencies submit a written status report to DQM on a semi-annual basis. On an annual basis, DQM conducts a visit to each COMPASS agency. There are 7 agencies with COMPSASS status.

Council on Quality and Leadership (CQL) is a national organization that works with public and private organizations with a commitment to person-centered services and supports by defining, measuring and improving quality. CQL offers technical assistance, training, and support for organizations that seek to move from theory to practice in achieving person-centered outcomes for those they support. CQL offer an accreditation program based on personal outcome measures and continuous quality improvement.

A COMPASSIONATE UNDERSTANDING

2011-09-19T00:00:00.000-07:00

Below you will read a beautiful heart-felt letter. It comes after the 9/11 attacks, and puts things in a perspective that helps us control our grief, where there was no sight before. The author of this letter, Marie Levine, a lovely woman who facilitates and guides The Compassionate Friends chapter meeting on the East End of Long Island, in a little hamlet called Quogue, NY

Pam and her son Russell

Thank you Marie Levine, a friend of my dear friend Pam Rae, another parent of a child who left this earth too soon.

Jayne Raines Newton 8:18am Sep 10
I thought I was an expert on death. On surviving death. On surviving the death of one's child. On bereaved parenthood. After all, its been eight years since we buried our only child whom we had for 22 years. I thought I had experienced every emotion, every response, every up, and every down this journey had to offer. I thought I had read enough and talked enough about bereavement to many similarly bereaved people over the course of these years to qualify as a bonafide expert. I thought everything that could be said, written, or read on the subject. had been. On Sept. 11th I discovered all over again how much I had to learn. Our city, indeed our world, seems to have qualified to be a compassionate friend. Never could I have imagined how universal is our bereaved state. Never in more than eight years have I read more on the subject. And never has it been made more clear how common and familiar each new bereaved family's experience is ... even in its uniqueness. It was a sparkling clear day in New York City on Sept. 11 th. As usual, I was walking to work and was about a mile north of the Trade Center when I heard the plane overhead. It was incredibly loud as it roared past at what seemed to be a dangerously low altitude. Everyone in the street looked up in wonder and then resumed their rush to the office. Ten minutes later, as I walked into my own office, a co-worker rushed out with the news. I knew it was the plan that had roared past me only minutes before. My husband works just blocks from ground zero but was home on vacation. I called him and told him to turn on the TV. During first surreal hours he described everything to me as the events unfolded ... the second plane, the burning towers, the collapse. My instinct was to rush from the office and head downtown the two miles to ground zero. I felt an irrational need to put my arms around everyone - to rock and coddle and comfort them and be comforted by them. At that moment in time, the world felt as vulnerable as I've felt since my child's death. When I finally left my office, I headed toward the hospitals that line the blocks near where I live. I wanted to give blood along with the thousands that were already lined up to do so. As I neared my home, a mile northeast of the burning WTC site, I saw the first flyers of missing loved ones posted on the brick walls of the hospitals. Only several hours had passed and already the wall bore more than 100 faces - young, happy, beautiful faces smiling out to a world gone mad. A tall, burly young man was posting a flyer. I asked him who the young man in the photo was. "My brother," he choked. I reached up and wrapped my arms around him. I never learned his name, but in that moment, we were family. The many instantaneous deaths that occurred that day sent the civilized world reeling into an abysmal grief that we know only too well. How is it possible that these souls could vanish from our lives in seconds? Each of us who has experienced the singular loss of our child, our brother, our sister, wonder at the enormity of this loss. I used to get angry when I realized that people had no idea what I was feeling. I find no comfort now that so many do. Soon, after the memorials, the telethons, the concerts, the outpouring of love and understanding, the rest of the world will nestle in and take comfort from their complete families. It is then our newest compassionate friends will begin to recognize the sad reality of their new world. The terrorist attack has also rekindled much of our own individual trauma. One TCF newsletter editor wrote that he feels as if three years of grief work has flown out the window. But this tragedy also has brought into clearer focus how far we each have traveled on this path. Each of us has an opportunity to help. We have a distinct advantage over all those who wanted desperately to help during those first horrific days. We really can. At TCF's Manhattan Chapter, we have members from all over the city, including the Bronx, Brooklyn, Westchester, and Long Island. Immediately following the disaster, they, along with TCF members from all over the tri-state area and the country, called to offer their help. Outreach seemed the most important task. We made up a simple flyer so those who suffered the loss of a child or sibling at the World Trade Center would know about TCF. Those flyers were distributed to every hospital, church, and synagogue. And all of our members took copies to their offices, making the information available to coworkers. Let us all commit ourselves to reaching out to the thousands who are now our newly bereaved neighbors. We know what helped us in our darkest hours. We know what to say and what not to say. And we know not to stay silent. Let's share what we have learned with those who are only beginning to travel this path. At this sorrowful time we, as compassionate friends, may well have the greatest gift to give - our hope and determination to survive. -

Written by Marie Levine, TCF Manhattan Chapter, following the WTC attacks. Her only child, Peter Adam Levine, age 22, died on August 7, 1993. Written shortly after 911

JAY LOCKETT SEARS

2011-09-12T00:00:00.000-07:00

1962 found Jay Lockett Sears, surfing in the 1959 movie "Gidget" starring Sandra Dee and James Darren. He joined his father Vernon Sears working as an architect at his Dad’s Quogue firm, Sears & Sears. For over 100 years the family had spent summers in Quogue, and so the ocean always played an integral part of the Sear’s lives. "Surfing was my number one love, over women and money. It's been in my family for a long time. The waves became symbolic of love. Going with the flow and being inside the tube of a wave, as the water curls over you - it's indescribable - better than sex," said Sears.

During his very creative workaday life, Jay Lockett Sears designs the homes most people only dream of – “15,000-square-foot postmodern villas with soaring entryways, palladium windows, decorative columns, gambrel roofs, twin turrets, billiards rooms, a dozen bathrooms and stereophonic wine cellars. His architectural creations -- more than 1,500 over the past 40 years that started with the big, boxy, flat-topped Bauhaus look, then shifted to dramatically angular pitched shed rooflines in the 1970's and 80's before settling into the current country-look, shingle rage -- dot the waterfront from the Moriches to Montauk.”

''As an architect, I'm a doctor of house psychology,'' says Mr. Sears, living in three rooms above his office in a rundown cottage on the water’s edge in Quogue. ''I have to have a lot of patience.'' His clientele comes from the Hamptons, and that means fantasy rooms and structures, that can test his patience and design ability.

On his 60th birthday party last year he received a pair of large feathered wings, and he talks about talk about his work as an arch (as in architect) angel, spreading acts of kindness on the South Fork.

''I find more enjoyment in doing acts of kindness,'' said Mr. Sears, hobnobbing at over-the-top Hamptons affairs in the summer, bringing in donors to his five-year-old Mission of Kindness organization, and expounds about good deeds, advocating compassion and love.

''Things happen when I put my wings on,'' he said. ''You are what you believe you are. If you put wonderful thoughts in your mind, that's who you become. If you think you are an angel, you are. Kindness can change the world.''

He also volunteered his time to East End Little League, Quogue Fire Dept., American Red Cross, the Midnight Run, and served on the boards of Survivors Art Foundation, the Westhampton Presbyterian Church, and Family Counseling Service. "Volunteerism is of major importance to me. I heard the words of Mother Theresa in a dream which I abide by, 'do ordinary things with extraordinary love.' "

His humanity hasn’t gone unnoticed, being named "Volunteer Firefighter of the Year" by the Quogue Fire Department. Disaster-trained, he worked with the trauma team of the American Red Cross after the Flight 800 crash, receiving the 1999 Humanitarian with a Heart from the American Heart Association, was named "Volunteer of the Year" in 1999, "Newsday" awarded him the "Everyday Hero," and he's been nominated for Oprah's Angel Network.

In 1996 took it a step further, the non-for-profit organization "Mission of Kindness" came into being. Dedicated to helping children to helping the elderly, Americans, Mexicans, the poor, the sickly and needy. "With a sunbeam God smacks me in the head with messages." Says the man. Since that day 30 years ago he's sure of one thing, "People aren't dying from illness or hunger…they're dying from the starvation of love," Sears stated. "Because of the dysfunctional families I really don't think this message of love and kindness is getting through. There's too much stuff in the kids heads - it's a distraction - the television, computers, and the games."

His notoriety is from his good works, his wings symbolic of who he really is. Mission of Kindness ads with Sears appear in all the local news publications, as he is pictured decked out in his white suit and wings. "I'm onto the level of teaching through newspapers, magazines, and television. I'm trying to live my life as the message. God has sent me in the trenches, by sending me into the shelters to try and help these families. Although, now I realize I can't help all of them…it's overwhelming. Homelessness became a real problem in Long Island, and I was sent into the shelters to share the message and be the message. It became a bottomless pit financially because the government resources aren't there."

"What becomes most difficult is to put an end to my architecture work. Even though my offices have been losing money the last four years, it's hard for me to stop doing what I've been doing for so long. It's just not as fulfilling as it once was. There's one thing I'd like to design, maybe a school. Church, retreat or Zen center…something spiritual that will make many peoples lives better."

Mr. Sears greatest gift is that he is. He has walked the walk and talked the talk we all so timidly wish to aspirer to, but his difference is that he is leaving the world in better shape for being in it!

"Gratitude has kept me alive. I'm still ready for another venture though. I'm happy to get to this level but I'm ready for a big, new adventure. Maybe take my act on the road, I'm ready to get out there." He also said: "Now I'm known more for my mission work than my architecture." And so one more hero to mankind appears, even when things can be at their darkest.

Contact: Mission of Kindness Children's Fund, P.O. Box 917, Quogue, NY 11959, 631-653-4218., and help by giving a generous donation.

GOODBYE DEAR LADY

2011-09-05T00:00:00.000-07:00

Yesterday, (August 30^th) I got the bad news on the phone that I was waiting to hear, reluctantly of course.

As a member of the board of directors and co-chair of the guardianship committee, I have become involved with people with disabilities and their lives, and their deaths.

One of the things that struck me is the amount of people I know from the agency, and how the number grows with each year that passes. Then with all the involvement, all the caring and business in that area that I chose, someone dies and sadness takes over. This is more sadness than the ordinary person may have in their life.

Jenny Kennis was a simple soul. Not mentally, there she was sharp, but in her needs and lifestyle, she made demands and yet they could be considered extreme in a sense. She always asked for ice cream when we visited her in her group home, and when we took her out. Often the staff would take her to a restaurant and she demanded: “Shrimpies” as she called them. She could do crochet and could tease me better than anyone cared to.

Once she was caught selling expired chances to staff members, until someone caught her and stopped it. She decided to go into business and crocheted covers for hangers and sold them at $2 each. I know because we bought enough of them. In a discussion about food, I once made the mistake of asking her what she liked and she gave me a rundown, then, asked me if I like to eat. The fool that I am I answered: “Yes” She then replied that I needed to walk around the block: “ALL THE WAY AROUND THE BLOCK!”

Driving her home from an outing one day, she told me she could drive. She concocted an elaborate story about how she drove on her father’s farm as a young girl. I was starting to believe her, then caught myself and said: “Oh, really, let me see your driver’s license.” She was waiting for me. She whipped out this Identification card that looked just like a NYS driver’s license. Now I was really fooled, and didn’t know that you could get an I.D. just like a driver’s license! When I got Jenny home I had to ask the house parent.

People with disabilities, all kinds either mental or physical, live a dual life. They live with their disability and then they try to adjust to the so-called normal world, working very hard to make plans to adjust, meeting challenges to daily life, looking for ways to ease the pain of not fitting in, and not allowing themselves to be disabled. Jenny was just such a person. Her aim in life was enjoy herself, as gruff as she could be, she found a way to amuse herself at others expense. She could lead me down a path and when I realized it, break out in loud laughter.

She loved her Momma and her brother Joe, who took great care of her from a far distance. Joe lived in California, and she on Long Island. Joe remembered her birthdays and holidays, sending gifts and cards, and telling her how he loved her. Jenny survived her beloved brother.

Whenever Jenny saw me, she would ask me for some kind of favor. Once she had a whole group of photos of her brother Joe. They were of poor quality old and worn. Being how I can manipulate Photoshop, I took the photos and retouched them, made them larger and clearer, and it was like I created the universe for her. It was the best favor I ever did anyone. It was one at that time that I truly enjoyed doing.

Often I would visit her at a hospital, finding her crocheting, her grey old head buried into her work. She would look up and say: “Joe! It’s about time, where were ya?” She would reach and grab my head and kiss me, her eyes dancing that someone came to see her. She made me happy I was there. It made me happy to know that this woman, with her physical and mental limitations could so express herself through her eyes. She loved my wife and my younger son Michael, always asking for him when my wife and I visited her.

I look at her picture and I see the spark in her eyes, the inner self-asking: “How do I look in this hat?” I think she was really asking, “How am I doing in this life?”

She was very guarded about her relationships. To her, friends were to be loved, protected and abused! When we visited her, she was very contentious with her housemates. She had no patience for anyone, and God forbid anyone of her housemates try to talk to my family and me when we visited her, they were shooed away and verbally reprimanded.

After the service at the funeral parlor, I stood looking at the casket for a while. It was a very inexpensive casket, that held a very inexpensive person, with a golden heart, and a tongue with a diamond edge. She had housemates who came to say goodbye, staff and friends. We all shared something, we all wanted to be there, there was board members and people I don’t know. We all had something in common for a disabled person, a love for Jenny and tears in our eyes.

Goodbye Jenny, never again will there be pain, never again will you suffer or feel left out. Never again will people stare at you who don’t know you, nor will children flee when they see you because you are a little different. Thank you for allowing me into your world, the beauty and simplicity of your being. God knew what he was doing when he created you: he made you a teacher that taught all who knew you what love means, what real love does. I will always carry your lessons in my heart and soul.

Good night.

SECTION 1115 MEDICAID WAIVER

2011-08-29T00:00:00.000-07:00

As a member of the NYSARC Board of Governors, I receive from time to time important information in regards to developmental disabilities.

Under the 1115 statute, the Secretary of Health and Human Services can allow states to “experiment, pilot or demonstrate projects which are likely to assist in promoting the objectives of the Medicaid statute.” 1115 Waivers are flexible, so states have room to develop Medicaid Plans that suit their state’s health care goals. Many states now apply for 1115 Waivers in an attempt to provide health care to more of their poor and near-poor citizens. The terms “experimental” and “pilot” suggest 1115 can’t be used to “permanently” waive or exempt States from statutory requirements deemed undesirable, but many state waivers have become semi-permanent.

NY State is seeking to use the 1115 waiver to address the a problem the state faces in regard to Medicaid financing, for developmental disabilities in supports and services. The issue is that the state bills the federal government far in excess of the actual costs of the programs the state operates. This is not an issue with the federal g0verment because it is encouraged by the feds to help initiate and put into play new and better ideas, methods and systems. That meant, from an institutional to a community=based system. It has its noble aspects, even for governmental agencies!

The problem for NYS is the huge gap of possibly $1.5 billion to the state’s financial plan. Medicaid and NYS held discussions to regarding refinancing of NY State’s system of supports and services to people with developmental disabilities, using the 1115 Research and Demonstration Waiver. NYS then submitted to Medicaid a “concept” paper using an 1115 waiver as a tool to remove the financial stress and burden to the state, regarding ways the state system is funded.

OPWDD (Office of People With Developmental Disabilities), the NYS agency, intends to introduce reform to the methodology of funding between the state and the federal government. It’s objective is to end reliance of institutionalize care, service models to integrate short and long term acute care and develop specialized managed care, among other things.

Reimbursement will be provided through individualized budgets, global budgets or capitation funding. The state to its credit is seeking to significantly reform the developmental disability service system. A new system will be in place after the initial five-year waiver period, and a totally different system will be in place.

For some of us who don’t know the differences between the budget possibilities, here is a very brief definition of each.

Individualized Budgets: an average of years on a case-by-case basis. Usually 3 to 5 years averages

Global Budgets: Total amount of health costs divided by the number of participants

Capitation: Insurance above and beyond a fixed amount that the health care provider will cover.

MUSCULAR DYSTROPHY

2011-08-22T00:00:00.000-07:00

With the advent of fall: comes the yearly-expected Muscular Dystrophy Telethon and Jerry Lewis. This year all that changes! Jerry Lewis will no longer host the show; instead will make an appearance on September 4. The 85-year-old comedian has given so much of his time and efforts toward such a worthy cause, and now it is time for him to rest. He will still be the National Chairman of MS.

"Jerry Lewis is a world-class humanitarian and we're forever grateful to him for his more than half century of generous service to MDA," MDA Chairman of the Board of Directors, R. Rodney Howell, M.D., said in a statement. "We will not be replacing him as MDA national chairman, and he will not be appearing on the Telethon."

As a tribute to a wonderful entertainer and truly great humanitarian, I will devote this week to MD.

Muscular Dystrophy, or MD, can be one of several inherited diseases characterized by progressive deterioration of the skeletal muscles. There are many forms of the disease, and are classified according to age at the very beginning of the symptoms, the pattern of inheritance, and the part of the body primarily affected.

Types of Muscular Dystrophy
The most common form of muscular dystrophy, Duchenne, was first described by the French physician Guillaume Benjamin Amand Duchenne in 1861. A recessive sex-linked gene located on the X chromosome and carried only by females causes most cases. Each son of a carrier has a 50% chance of inheriting the gene and developing the disease. Each daughter has a 50% chance of inheriting the gene and becoming a carrier. In small number of "sporadic" cases there is no family history.

The disease begins with leg weakness before age 3 and progresses rapidly, with death often occurring before the age of 30, often because of involvement of lung or heart muscle. Research has shown that the abnormal gene fails to produce an essential skeletal muscle protein called dystrophin. Becker's muscular dystrophy is similar to the Duchenne form, but appears somewhat later in life and progresses more slowly.

Fascioscapulohumeral muscular dystrophy primarily involves facial and shoulder muscles and affects both sexes. Symptoms can begin from adolescence to around age 40. It is caused by an autonomic dominant trait (at least one parent will have the disease). Progression is usually slow and severe disability is unusual.

Myotonic muscular dystrophy is a autosomally dominant disease affecting both sexes. It seems to be caused by the repetition of a section of DNA on chromosome 4. In a surprising development, researchers found that the number of repetitions on the chromosome increase and the disease becomes more severe with each generation. It is characterized by an inability of the muscles to relax properly after contraction and primarily affects the muscles of the hands and feet. It usually begins in adulthood and is often accompanied by cataracts, baldness, and abnormal endocrine function.

The limb-girdle form of the disease first affects the muscles of the hip and shoulder areas. Symptoms usually become apparent in late adolescence or early adulthood. Caused by an autosomal recessive trait (carried by a gene passed on by both asymptomatic parents), it can affect males and females alike. This form usually progresses slowly.

Treatment
There is no known treatment or cure for muscular dystrophy. Supportive measures and exercises can improve the quality of life and preserve mobility for as long as possible. Scientists have begun to identify the genetic abnormalities responsible for multiple dystrophy and hope that further understanding will lead to treatment. Genetic screening is recommended for all family members who might be carriers. Prenatal tests such as chorionic villus sampling and amniocentesis can detect some forms of muscular dystrophy early in a pregnancy.

SPINA BIFIDA & FOLIC ACID

2011-08-15T00:00:00.000-07:00

Spina bifida; Cleft spine, is a birth defect in which the backbone and spinal canal do not close before birth. During the first month of pregnancy, the two sides of the spine join together to cover the spinal cord, spinal nerves the tissues covering the spinal cord. Spina bifida is any birth defect involving incomplete closure of the spine.

The most common type of spina bifida is Myelomeningocele. It is a neural tube defect where the bones of the spine result in an incomplete spinal canal from not completing the bone formation, causing the spinal cord and meninges (the tissues covering the spinal cord) to stick out of the child's back.

1 out of every 800 infants get affected by Myelomeningocele.
Most common spina bifida cases are:
• Spina bifida occulta, in which the bones of the spine do not close but the spinal cord and meninges remain in place and skin covers the defect
• Meningoceles, the condition where the tissue covering the spinal cord sticks out of the spinal defect but the spinal cord remains in place.

Other congenital disorders or birth defects may also be present in a child with myelomeningocele. Hydrocephalus may affect as many as 90% of children with myelomeningocele. Other disorders of the spinal cord or musculoskeletal system may be seen, including syringomyelia and hip dislocation.

The cause of myelomeningocele is unknown, however, low levels of folic acid in a woman's body before and during early pregnancy may play a part in this type of birth defect. The vitamin folic acid is important for brain and spinal cord development. Also, a child born with myelomeningocele, future children in that family may also have a higher risk than the general population. However, in many cases, there is no family connection. Children born in the early winter months may catch a virus which plays a role, since there is a higher rate of this condition in the winter.

Symptoms
Symptoms include:
• Loss of bladder or bowel control
• Partial or complete lack of sensation
• Partial or complete paralysis of the legs
• Weakness of the hips, legs, or feet of a newborn
Other symptoms may include:
• Abnormal feet or legs, such as clubfoot
• Build up of fluid inside the skull (hydrocephalus)
• Hair at the back part of the pelvis called the sacral area
• Dimpling of the sacral area
Newborns may have a sac protruding out of the mid to lower back, and the doctor cannot see through the sac when shining a light behind it.
Signs and tests
Prenatal screening may help diagnose the condition. In their second trimester, pregnant women can have a blood test called: quadruple screen, screening for myelomeningocele, Down syndrome, and other congenital diseases in the baby. Women carrying a baby with spina bifida will have a higher-than-normal level of a protein called maternal alpha fetoprotein (AFP).
If the quadruple screen test is positive, further testing is needed to confirm the diagnosis. Such tests may include:
• Pregnancy ultrasound
• Amniocentesis
Myelomeningocele can be seen after the child is born. A neurologic examination may show that the child has loss of nerve-related functions below the defect. For example, watching how the infant responds to pinpricks at various locations may reveal where he or she can feel the sensations.
Tests done on the baby after birth may include x-rays, ultrasound, CT, or MRI of the spinal area.

Genetic counseling may be recommended. In some cases where severe defect is detected early in the pregnancy, a therapeutic abortion may be considered.
After birth, surgery to repair the defect is usually recommended at an early age. Before surgery, the infant must be handled carefully to reduce damage to the exposed spinal cord. This may include special care and positioning, protective devices, and changes in the methods of handling, feeding, and bathing.
Children who also have hydrocephalus may need a ventricular peritoneal shunt placed. This will help drain the extra fluid.
Antibiotics may be used to treat or prevent infections such as meningitis or urinary tract infections.
Most children will require lifelong treatment for problems that result from damage to the spinal cord and spinal nerves. This includes:
• Gentle downward pressure over the bladder may help drain the bladder. In severe cases, drainage tubes, called catheters, may be needed. Bowel training programs and a high fiber diet may improve bowel function.
• Orthopedic or physical therapy may be needed to treat musculoskeletal symptoms. Braces may be needed for muscle and joint problems.
• Neurological losses are treated according to the type and severity of function loss.
Follow-up examinations generally continue throughout the child's life. These are done to check the child's developmental level and to treat any intellectual, neurological, or physical problems.
Visiting nurses, social services, support groups, and local agencies can provide emotional support and assist with the care of a child with a myelomeningocele who has significant problems or limitations.

Expectations (prognosis)
A myelomeningocele can usually be surgically corrected. With treatment, length of life is not severely affected. Neurological damage is often irreversible.
New problems within the spinal cord can develop later in life, especially after the child begins growing rapidly during puberty. This can lead to more loss of function as well as orthopedic problems such as scoliosis, foot or ankle deformities, dislocated hips, and joint tightness or contractures.
Many patients with myelomeningocele primarily use a wheelchair.
Complications
• Difficult delivery with problems resulting from a traumatic birth, including cerebral palsy and decreased oxygen to the brain
• Frequent urinary tract infections
• Hydrocephalus
• Loss of bowel or bladder control
• Meningitis
• Permanent weakness or paralysis of legs
This list may not be all inclusive.
Calling your health care provider
Call your health care provider if:
• A sac sticks out of the spine of a newborn infant.
• The child is late in walking or crawling
• Symptoms of hydrocephalus develop, including bulging soft spot, irritability, extreme sleepiness, and feeding difficulties
• Symptoms of menigitis develop, including fever, stiff neck, irritability, and a high-pitched cry
Prevention
Folic acid supplements may help reduce the risk of neural tube defects such as myelomeningocele. It is recommended that any woman considering becoming pregnant take 0.4 mg of folic acid a day. Pregnant women need 1 mg per day.
It is important to remember that folic acid deficiencies must be corrected before becoming pregnant as the defects develop very early.
Prospective mothers may be screened to determine the amount of folic acid in their blood.

THINKING OUT OF THE BOX

2011-08-08T00:00:00.000-07:00

Recently as a board member, I was invited to view a new test pilot fitness program for our participants. The idea is the genius of one J. Andreassi. Mr. Andreassi is the head of our community affairs/foundation office, and since he has joined the agency over a year ago, has taken the job to a new level at AHRC Suffolk.

Most if not all of our consumers have physical disabilities. Many are ambulatory, and are at slight to moderate or even extreme risk. The fear as a guardian, sibling or parent is if your loved one is getting enough physical activity to keep healthy as is possible under the circumstances. With aging comes even more risk of physical disability taking over as it is, so the issue is very real.

Under the instigation of Mr. Andreassi, a pilot program was set up, using every precaution imaginable, to measure the effects of an exercise program that would get the participants involved, in a meaningful way, yet reap the benefits that are intended.

The program participants spend a half hour following young volunteers that lead the small groups in a series of exercises.

I watched one of the sessions, and was so impressed by the eagerness of the participants to be part of it, the enthusiasm of the volunteers with their patience, kindness and above all, respect for each individual. One participant even said how much fun she was having. There were nothing but smiles and cooperation from everyone.

My hope is that the program proves to be of value for the consumers. I know if we can keep them active, they will probably have a better chance in the days and years ahead to withstand the aging process, and live longer and healthier lives. Not all can benefit from this program if it succeeds, but it may lead to other modified versions to help even those who cannot participate as it is now. My daughter is severely challenged both physically and mentally, but the agency manages to keep her healthy. If they could find a program for her that would keep her physically fit, I would be very happy.

But things like this pilot program don’t occur by accident. There is a reason behind it all. The reason is the staff that runs the pilot program, their thinking out of the box, and their love and devotion to our population. Mr. Andreassi is a very enthusiastic man, a man with a mission, and a man with a lot of love in his heart. His ideas along with his willingness to listen to new ones, makes AHRC Suffolk a very successful organization. Under the leadership of Mr. Bill Leonardi and Ms. Lisa Bochner, supporting Mr. Andreassi, the future bodes well for people with developmental disabilities, and the care they will always get.

That you Mr. Andreassi, you are a class act.

NOONAN SYNDROME

2011-08-01T00:00:00.001-07:00

NOONAN SYNDROME

Noonan Syndrome is a form of dwarfism that occurs in somewhere between 1/1,000 and 1/ 2,500 newborn babies, that affects both male and female equally. The Noonan syndrome features are easier to see at birth and by adulthood they are often very subtle and can easily be missed.

What are the features of Noonan syndrome?
A person who has this syndrome may not show all the symptoms, they may not even know they have it until they have a child with more of the features of Noonan syndrome, and it is possible to have very few problems with this syndrome. Babies born with Noonan syndrome may have a short neck, with excess skin where the neck joins the shoulders. This syndrome can make the neck seem broad and is sometimes called “webbing.” There are differences in the eyes, including cross-eyedness, eye tremors and very bright blue-green iris. The chest may be shaped a little differently, either sticking out or sinking and there is also an increased risk of of hearing loss.

It is important to have a cardiac evaluation if Noonan syndrome is diagnosed, as Babies with this syndrome are also at an increased risk of cardiac defects.

Other serious problems include a smaller than normal jaw, that can create feeding problems, and even in some cases lead to failure to thrive.

Children with Noonan syndrome may have a coagulation abnormality, the blood may not clot as quickly as it should. There is a wide range in coagulation differences, ranging from more serious problems of clotting after surgery, to easy bruising, and even to an abnormality seen in the laboratory with no known clinical consequences.

Crossed eyedness occurs when the muscles of the eyes are not lined up at the same point. One technique is patching one eye in that it may resolve the problem as an alternative to surgery.

Surgery would be performed if the jaw is so small that it makes breathing more difficult. If the lower jaw is too small it can be surgically moved, and the age at which it happens would depend on the health of the child and how small the lower jaw is.

Hearing loss can occur in people with Noonan syndrome. Sensorineural damage (the hearing problem is in the inner ear, auditory nerve, or auditory centers of the brain) can occur. Although surgery frequently does not improve this type of hearing loss, hearing aids can help.

Treatment for any cardiac problems is usually based on the symptoms present.

Learning Problems in Children
Approximately 75% of the children with Noonan syndrome have no learning problems. Although this is not the norm, it is better than most syndromes in terms of percentages. It is not known why children do have learning problems.

Can I have another child with Noonan syndrome?
There is a low chance of having another child with the same condition if your child is the first person affected in your family, because the change in the gene that caused Noonan syndrome may have occurred for the first time in the egg or sperm. This means that if you have the condition there is a 1 in 2 or 50% chance with each pregnancy that you will pass it on to your child.

Since Noonan syndrome is a variable syndrome, it is possible as I said earlier to have Noonan syndrome and not realize it until you have a child displaying more of the features associated with this condition. Even if you have Noonan syndrome, it is not possible to predict if your child will have the same, more, or fewer problems than yourself.

Diagnosis of Noonan syndrome is made clinically, by looking at the features of a person. Changes in a gene known to cause Noonan syndrome occur in about half of the people with Noonan syndrome. In the other 50% the cause is unknown. Testing is still in the research stages only.

FEELING GOOD ABOUT OURSELVES

2011-07-25T00:00:00.001-07:00

Every now and then we question what we do as advocates, and as parents. We know the hard work that goes into working with people that have developmental disabilities, and sometimes the progress is so slow, we want to throw up our hands in defeat, and then we get a hold on reality and realize that is not an answer.

Then there are those rare and special times when something occurs that makes us all winners, when a person who has a developmental disability exceeds, excels and proves that the human spirit is indeed a fighting one.

Recently I got an email with some truly wonderful news. News that makes me swell with pride in someone, news that makes me happy and grateful for all involved. The some one who is important here is a young lady by the name of Sabrina Walker. What follows is the email I speak of. It explains my pride in her, my agency and my fellow board member and friend, her dad: Ken Walker. This is a great time for all of us who read this blog.

“PRESS RELEASE

WORLD GAMES MEDALIST

Amityville’s Special Olympics tennis player Sabrina Walker (38) has just returned from Athens’s, Greece where along with 7500 athletes from 170 countries she competed in the Special Olympics World Games, held every 4 years. She earned a silver medal for mixed doubles and a bronze medal for women’s’ singles.

Walker was one of only 20 tennis players on TEAM USA, which consisted of 315 athletes with intellectual disabilities competing in some 22 sports. She had won gold medals in The NY State Summer Games in Utica in June of 2010 in the top division and was selected by lottery from among the gold medal winners in the other divisions.

Sabrina has been playing tennis for the past twenty years and practices weekly with the LI Special Olympics Tennis Team at Bethpage Park Tennis Center. She is currently the number one-ranked woman Special Olympics tennis player in New York State.

Interviewed for this article, her parents Margot and Ken Walker, who traveled to Greece to cheer her on said: “ We have never seen Sabrina play with more focus and
determination.”

Sabrina’s opponents included a Dutch woman, a Colombian mixed doubles team and a young woman from the Bahamas. “I met people from all over the world and loved trading pins. It was the experience of a lifetime!” said Sabrina.

Special Olympics Int’l. is a worldwide non-profit sports organization for persons with intellectual started in 1968 by Eunice Kennedy Shriver. The organization serves 3.1 million athletes in 185 countries.”

And so we can thank Sabrina for her effort, focus and determination, for her courage once again and for the sense of accomplishment her parents now have. We might also thank the agency, AHRC Suffolk and the great staff that provides so much for Sabrina and all they serve.

Thank God.

HOPE HOUSE OR THE SAUL AND ELAINE SEIFF EDUCARE CENTER

2011-07-18T00:00:00.000-07:00

Somewhere, tucked away behind the administration building of AHRC Suffolk, located in Bohemia stands a special place. It is where all parents in Suffolk County can go to restore their faith in the future, after they learn that they have a child with developmental disabilities. They come to see an amazing school building, housing not only precious human beings being given a chance in life, but the modern, state-of-the-art equipment that supports the miracle making staff.

Hopefully many agencies like Suffolk Chapter have a school that does what Suffolk does. The Saul and Elaine Seiff Educare Center is a school in Bohemia for children from infancy through age twenty-one. These school-age children are enrolled in the specially designed programs because of their unique needs and challenges that cannot be accommodated through their local school districts. Through Early Intervention and Pre-School programs, services for "at risk" youngsters often diminish, if not eliminate, the need for costly special services for a lifetime.

The classes cover a wide variety of educational curriculum and are based on the child's functional level. Classroom goals and objectives focus on activities of daily living, cognitive development, social, and communication and motor skills. Full clinical services (physical, speech and occupational therapy) are provided as needed as well as music, art and adaptive physical education.

In the heart of this educational setting is:

Multi Sensory Environment (MSE) - A Multi Sensory Room installation was completed in August of 2010. This state-of-the-art environment is both aesthetically pleasing and functioning beyond the highest of expectations. The MSE still has room to grow and consideration for adding a ceiling track mobility system is planned if funding becomes available.

When you enter the long single story building; the overhead bus canopy immediately greets you: that shelters the students from the weather as they start their day. It also shelters the brick walk that has so many engraved names dedicated to love ones in either memorial or as a gift of support to the agency.

As you would explore the grounds, you soon encounter a rather unique playground, one that is again shielded from the heat of day and rain and covered in a soft cushion material that helps keep the children from hurting themselves if they fall, while enjoying a day in fresh air.

The security conscious building has a set of opening doors that automatically open as you approach for the convenience of wheel chair accessory, with a monitoring partition to screen anyone from entering unannounced.

But like any building or structure, it is only brick and mortar, the real beauty is in the people that work there. You might think of it as work, they seem to indicate that it is a passion for loving and giving. These people are the staff, the very heart of the agency, from the head of the school, Vicky Shields to the teachers, aids and assistants that make the program called Children’s Services function.

As you sit waiting for an appointment in the lobby, you can sometimes hear the sound of footsteps, as a teacher or aid will walk a child down a hallway, and the conversation sounds so kind and loving. The child, often in a wheel chair, but not always, will be addressed in the highest manner. If you read the eyes of these children, you will see love and trust, the two things that make the staff so valuable. They love their “work”!

More often than not we discuss the need for funding, the different types of problems people face in their lives and the support organizations out there. The AHRC Suffolk Children’s Services programs, in spite of the reason it exists, is a happy place and a warm pace, and a place to say Thank God!” for.

For more information, contact the school at (631) 218-4949 or email Shari Menachem at smenachem@suffahrc.org.

CLEAR THE RUNWAY

2011-07-11T00:00:00.000-07:00

“We cheer for those who want to learn.
We support those who want to be part of their community.
We respect those who want to work and contribute to society.
Are their efforts less important because they are intellectually disabled? Or do their special challenges make each accomplishment even more worthy of support?”

From the AHRCSuffolk.org website.

A few times a year the AHRC Suffolk Chapter holds a general membership meeting, and once a year, to ensure a large turnout, we host a fashion show along with coffee and dessert. The models of the beautiful Estelle’s gowns are none other than our program participants! It is the height of therapeutic planning and involvement!

As you see the gals stroll along the runway, flaunting their gowns to wild applause and encouragement, they shake their hips, do a dance/walk routine (all unexpected) and generally try to entertain the audience.

One gal went down the runway in a wheel chair, one could hardly walk, and one needed assistance to stand. It was each girls day to shine, and shine they do! The gentlemen are dressed in their finery, and escort the ladies up to the runway, and feel a special moment too. When you realize that this is their day, that they will not ever have a day like this for the most part, you want to jump up and applaud the staff for doing what they do.

It seems to me that what has happened is we are ringing the tune of progress, watching people with disabilities do what they would only dream of doing, and doing it so well!

The modeling wasn’t the only wonderful moments I witnessed at the event. We even had some talent, real goodness talent, the kind the touches you heart and warms the soul. To sing for us the beautiful song: “Wind Beneath My Wings” from her wheel chair, a young woman sang from her heart, her eyes searching for acceptance of her performance, never missing a beat or a word of the lyrics, and when she realized how well we as an audience responded, her eyes lit up, her face opened a wide smile, and we all used her wind to lift our wings as soared to the sky!

But the wonderful staff was not finished. Soon a group of women came out to perform, calling themselves the Blended Voice Chorus of Westhampton Beach. They sang: A Pretty Girl Is Like A Melody, hitting it out of the park.

What the whole event proved was that the agency and many like us, striving to bring dignity and hope to people with developmental disabilities, and an easing of fear for their families, prove time and time again, how successful they are. How great is God’s work that we can witness the miracles that occur everyday.

There is a prayer that is recited before every meeting like the General Membership Meeting, and before each board meeting that goes like this and is called

“Suffolk AHRC Prayer
Dear God,
Every person has a purpose, and, while your eternal plan is not known, we do reaffirm our role in helping those in need. It is our prayer that we will ever be mindful or our responsibility as parents, families and friends of people with intellectual and other developmental disabilities, helping them to a full measure of the precious life you have given. Guide our association so that it may be ever strong and selfless and bestow your blessing on us all.
Amen.”

TRANSITION AND FUNDING-THE FUTURE OF AUTISM

2011-07-04T00:00:00.000-07:00

As the world of Autism becomes a global awareness, more and more we realize just how unprepared we are to deal with the problems associated with it.

The buzzword today in this world of autism is probably the most single identifiable word we can utilize that can best describe what is needed now. That word is: “Transition”, and it really means what will happen to a young adult from the day of graduation from our public and private institutions and into the adult world. It means where will the services come from, who can provide them, and at what cost?

About 80% of the autistic population in the United States is, according to the Southampton Press, under the age of 18! They can be in our public school system until the age of 21, then what will happen? Their services will have dried up; they will be in need of additional long-term services.

In the coming years thousand of children will become legally adults, needing support and services, some will need constant supervision and housing, where will the money come from and who will provide it in this economy?

Here is where the word “Transition” comes into play. In New York State, it is a mandate that school systems provide a period from the age of 15 where the system will help in the preparation of autistic students leaving the schools and entering into the colleges and work force. In finding help from private social services and agencies to assist in the everyday needs of living in society, this plan should address post-secondary education, life skills, vocational training and all available government benefits in preparation for the child and family for what comes after graduation is the plan.

The problem is that not all school systems can do a good job of it, and some have hired consultants to deal with it. But is the school system solely responsible for this transition? The parents need to be advocates for their child to adequately prepare autistic children into the mainstream of life. Without the parent participation, transition can become a failure, because transition is touching more than education, it is preparation for life skills also, something that is needed to be practiced at home.

And how do we measure the success of the transition? The greatest measure is jobs, or finding a college. However, that is not the only measure. Adaptation to society becomes a must, holding down a job, being mainstreamed in schools, help to teach society that autism is a condition that can be conditional. It should not be feared or the individual ostracized when autistic people are present, which they are capable of contributing, are valuable and must be allowed into the social circles that prevail where appropriate.

What Are the Options?

Aside from the obvious, that is teaching the general public and in particular the corporate world, we need to change the perspective of autistic people as the world sees them. Private not-for profit agencies should start to provide career counseling and job coaching. When the world starts to believe that an individual can do a job, he will be able to, and as parents, the need is very strong to advocate in that direction.

The object of a good transitional plan is to make an individual ready to face the world in all its complexity. It is helping adults become adults in mind and spirit; it is a road map to getting on with a productive life.

Colleges and universities are now recognizing that there is a need to adapt to autism within their own structure. More and more schools of higher learning are now gearing up for the influx of autistic students, creating support services for those incoming students.

But by nature, autism is not an easy thing to treat. There are many different types on the spectrum; no easy or direct treatment can be utilized as one size fits all. What comes into play is a system to measure functionality.

Adaptive Behavior Scale

Agencies by nature need to sort out the individual needs, to ascertain what levels of functionality exist in each individual. This is to measure what level of services is needed, along with something called the Adaptive Behavior Scale. It is the measure where by an agency can determine how well one functions in everyday life, doing the things we all take for granted, brushing your hair, cleaning your teeth, cooking, shopping, etc.

The bad news is that more and more children are being diagnosed with Autism, and the numbers are rising rapidly, and as they enter the school systems across the country, there will be a glut of services, and no money to provide them!

PUTTING IT UP WHERE IT COUNTS

2011-06-27T00:00:00.000-07:00

Recently, I wrote about what dad’s need to do as advocates. I have been taking my own advice for years and now have decided to expand upon it.

I recently started a business with one of the contributing writers to this blog. She is a champion of The Compassionate Friends, and the issue of bullying, both of which she wrote so eloquently about in the past. The name of the business is called Russell’s Tour & Event Planning, and what we do is create day trips into Manhattan, supplying bus transportation, usually lunch and one or two stops to tour or visit. My partner is Pamela Rae, and she is a very creative lady and a wonderful gal.

In our decision to build the business, Russell's Tour & Event Planning, we decided to look at it as a venture to help and give something to this world, that many businesses don’t put in their business plan, to help people with both physical and mental disabilities with resources in terms of some of the profits we generate. We feel we will take a salary for Russell’s and dedicate the business for not-for-profit agencies and organizations that need help in raising money.

I think we are proud of our company, and we hope to do a lot of business in the future helping people with the many issues that prevail and raise the funds they need. Any profit Russell’s generates will partially go to both The Compassionate Friends and AHRC Suffolk. The participating agencies and/or organizations will add on their profit margin and all that goes to them. These agencies and companies will not invest any money into Russell’s they will only benefit.

We are planning a tribute memorial to Ground Zero and the 9/11 monuments, a crime scene tour and will planning trips to Sedona, Arizona and overseas to France in 2012!

We want Russell’s Tour & Event Planning to succeed. We want this because it makes the world a little better and maybe there will be more hope in this unfortunate economy that so bleeds the not-for-profits.

Russell’s is also looking to run events for various organizations, such as memorials, party’s and religious and cultural events to not only commemorate, but to be fund-raisers, taking staff people away from this down time and allowing staff to stay more productive, while Russell’s does all the leg work.

If you know of a company that could benefit from Russell’s involvement, give us a call at: 631-801-2231, or email us at russellsevents@yahoo.com you won’t be sorry.

HAPPY IS AS HAPPY DOES

2011-06-20T00:00:00.000-07:00

My daughter Ellen suffers from Angelman’s Syndrome, or more commonly known as Happy Puppet syndrome from the way her gait and disposition come across.

She carries on her beautiful face, a smile, not because of the syndrome, but because of who she is. Her life has been made simple by the sheer fact that she is pain free, and loves people. When I return her to her home at the Intermediate Care facility in Shoreham/Wading River, NY, she immediately goes into her comfort zone. Her adjustment has made her happy, the people that work and live there all interact with Ellen, and she in turn does the same.

The value of the agency increases ten-fold when they can actually affect the mood and pleasure of any individual, let alone a person with developmental disabilities! They have made my Ellen very happy. Ellen is not the only one who is happy; all who live there shares it. When I arrive usually on Sundays to pick her up and then return her at night, the staff greets me with a courtesy and politeness that borders on happiness, a contagion that has affected my daughter. When Ellen returns home, she immediately sees someone she recognizes and hugs that person.

That the general public has become more accepting of people with developmental disabilities has made her life and her parents lives much happier.

But how did this all happen? How did the world become more tolerant of people like Ellen? The internet has played a role, organizations that support people like Ellen now have a presence that is easily accessible, both to learn about and to communicate with. The schools are now dealing with Ellen’s issues more openly, dedicating portions of budgets to educate children, the media has indeed played a big part, and more importantly, advocacy is now more than ever present in our legislative buildings and networks.

There lies some prejudice still, people don’t want their taxes paying for people with disabilities, and some people are still not educated in the field of developmental disabilities, but more and more families are coming to grips with the issue and are being affected by it, either directly or through someone they know.

Years ago people kept the family member who suffered hidden away. It was an issue you did not take up with anyone, and it was whispered about. The individual was shunned, and sometimes so were whole families. D.D. was a shameful, dirty little secret. It was the plague of the day.

Around the ‘60’s, someone opened the windows and let in the fresh air. Advocacy had started way back in 1949, but it became a true force over a decade later. In the ‘70’s I got involved, and have been active for almost 36 years at least. My wife and I have both worked hard for the agency that now cares so well for Ellen, and we have benefited by their expertise, and so we contribute what we can.

I used to think that Ellen was our cross to bear, that God gave us this to see what we were made of, if we were simply summer soldiers or sunshine patriots. What I failed to see was the gift God handed me. He gave me a child that is all innocence; all love, all the time. She knows only to be happy, to make others happy and to leave us happy all the time. I can attest to the fact that she is NOT a puppet, but a human being that brings unconditional love. I am a lucky man: she is a beautiful woman today, she always will be, and I will always be happy that she is there.

No, Ellen’s life is not “normal”, but if you have that much love coming your way, you would want to protect it, nurture it, and love it back too.