Category: Uncategorized

Jeff Stimpson, 39, lives in New York City with his wife and two sons, Alex and Edwin. He has been a working journalist for 15 years and maintains JeffsLife, a site of essays at jeffslife.tripod.com/alextheboy.

Therapists have been coming into my home for 13 months to work with Alex. After he was born two years ago, he underwent everything from naso-gastric feeding and callous jabbing of needles by nurses to medically induced paralysis, all during what should have been crucial months of his development.

Thirteen months ago, nobody would say what Alex might be able to do, or not do, in the rest of his childhood. So we got therapists for feeding and speech, as well as occupational and physical therapy, as part of federally-funded Early Intervention.

Remembering what we did with doctors for the 13 months that Alex lived in hospitals, we sized up Alex’s therapists as they came through the door. We didn’t want a therapist who came with simply a laundry list of semi-medical activities for Alex and us. We wanted Alex to have fun.

“You’re not looking for someone with a lot of shtick,” says one of Alex’s therapists, Ron Doomchin, a special instructor in New York City. Ron has worked wonders with Alex, who scampers into the hall bouncing with excitement whenever Ron arrives. “You’re looking for someone who comes in and sizes up the situation. First impressions are important.”

First on Ron’s list was to teach Alex to listen to a flute. Then he taught Alex to sit quietly and flip the pages of a book, then to track bubbles with his eyes.

Our therapists have been pretty good. He likes most of their toys; lately he’s happier to see Ron’s toy bag than he is to see Ron. Another therapist explained to me a chart of “normal” development and helped me figure out how Alex might be ahead in some areas and behind in others. She also recommended a babysitter. “Sometimes parents aren’t informed, and they don’t ask enough questions,” says Cheryl Rooney, Alex’s OT. Ask about experience and education, she advises. “You generally don’t want people doing home therapy who have less than one year’s experience.”

“Ask if they’ve worked with children who present different types of conditions and challenges,” Doomchin adds. “Ask if they know any of the people at the agency that they’re working at. Ask if they can recommend different types of therapists and why. In explaining, they’ll demonstrate their knowledge. Does the therapist explain the materials and techniques without jargon? Taking the time to explain long-term goals? Establishing communication? That leads to finding out more about the knowledge of the therapist. Are they flexible?”

Inflexible therapists might not talk much and could be quick to dismiss a parent’s questions about a new therapy. One of Alex’s early therapists, for instance, criticized our collection of toys, insisted on using her own toys instead of Alex’s to teach him skills such as stacking, and would sometimes spend a whole session making him reach for a toy without ever letting him touch it — despite the frustration on his face. She insisted we brush him, though he seemed to get little from it. We got rid of her in a month.

“You kind of get a feeling for people,” Rooney says. “And if you have a therapist who’s been treating your child for a couple of months and the child screams in pain when the therapist comes through the door, then something’s wrong.”

Other tips include:

• Keep a notebook. Jill has a three-ring binder with one page devoted to therapists’ numbers for beepers, portables, home phones, and e-mail addresses. You can never have too many ways to contact a therapist. Devote another section to therapists’ written entries, made once a month.
• Hang around during therapy, especially during the first month. Don’t regard it as a break time for you the parent until you feel sure the therapist and your child are a good match. Always watch for how happy your child looks during therapy.
• Bear in mind that some therapists are quick to cross boundaries – especially after they’ve attended a conference — with OTs dispensing advice on vision, PTs opining on feeding, and so on. Question a therapist you feel might be stepping beyond his or her area of expertise.
• If your therapist and child seem happy with the arrangement, let the therapist cross a boundary.

Good sites include:

The American Physical Therapy Association
Includes state-by-state listings of specialists and events.

The American Occupational Therapy Association
Includes breakdown of information for consumers, site map, and chat area.

Library of Congress, List of State Government Sites
Shortcut to sites for state governments, including state departments of health that often oversee therapists’ licensing.

This information is, with permission, being shared as a courtesy.

YOUR LEGAL FRIENDS: IDEA AND SECTION 504

by Margot Andersen, M.S.W.

Understanding the law in special education and how it can work for you will make you a better advocate in securing services for your child. People are often intimidated by the jargon they consider to be reserved for legal experts. Since “knowledge is power”, and you want to be the most powerful advocate you can be, let’s begin to de-mystify the legal terms. Children who have disabilities can be served under two separate laws: IDEA, a categorical funding law and Section 504 of the Rehabilitation Act of 1973, a civil rights law.

IDEA stands for the Individuals with Disabilities Education Act. This Federal law was originally enacted in 1975 as P.L. (Public Law) 94-142 called The Education for All Handicapped Children Act. This law was re-named IDEA in 1990. This law was designed to protect the rights of handicapped children after Congress found that over half of the 8 million handicapped children in 1975 were not receiving appropriate educational services which would enable them to have full equality of opportunity. Although there have been 5 sets of amendments to the 1975 law, the basic principles remain the same. In other words, all children who qualify under the 13 categories spelled out by IDEA are entitled to:

—free appropriate public education (FAPE)
—appropriate evaluation
—individualized education program (IEP)
—least restrictive environment (LRE)
—parent and student participation in decision making
—procedural due process

IDEA is a funding law. It is an agreement between States and the Federal government that the States will comply with the statutes and regulations in order to receive federal funding for the education of eligible students ages birth to 21. In order to be eligible for service under IDEA, a student must qualify under one of these diagnostic categories: speech or language impairments, visual impairments including blindness, orthopedic impairments, hearing impairments including deafness, multiple disabilities, mental retardation, autism, traumatic brain injury, specific learning disabilities, severe emotional disturbance (Bi-Polar Disorder), or Other Health Impaired (for example, ADD/ADHD. Etc). In addition to having the condition, one must also be able to show that the condition adversely effects learning. The student must be in need of both special education AND related services. At the core of IDEA is the individualized education plan (IEP) which is the blueprint for delivering all the services. The IEP must be reasonably designed to provide educational benefit. As such, the IEP must have goals written that have measurable outcomes to show that the child is making progress each year. IDEA also has many legal procedural safeguards and guidelines, which schools must adhere to.

Section 504 of the Rehabilitation Act is a civil rights law that applies to programs that receive federal financial assistance. To be eligible, one has to have a physical or mental impairment that substantially limits a major life activity, such as learning. Simply put, schools cannot discriminate against students with disabilities on the basis of those disabilities. Section 504 is a much broader law than IDEA. It does not have all of the procedural safeguards and guidelines, and it is not a funding law. Although the rules under Section 504 have been in place since the start of the 1977-78 school year, many schools still do not fully understand how to apply it to students with disabilities such as ADHD or Bi-Polar disorder. Section 504 applies to students needing special education OR related services and as such, may apply to more children than IDEA. Under Section 504, a child may only need to receive accommodations in order to function in his/her classroom.

If a parent disagrees with the programming decision made by the school, the parent has the right to ask to go to mediation or to request a due process hearing under either IDEA or Section 504. Understanding the Special Education maze is a challenge and understanding how to apply these laws to your child’s unique needs is essential.

Margot Andersen, M.S.W. is a Clinical Social Worker, the parent of a 21 year old son with ADHD, LD and Bi-Polar Disorder, and is a professional Educational Advocate. She has a private practice specializing in individual counseling and educational advocacy for parents of children with unique educational needs. 847-272-4090