Nurse Grace

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Grace Chimene Pediatric Nurse Practitioner. I am interested in the health and safety of children. BSN RN University of Texas School of Nursing 1983 MSN University of Texas Medical Branch Pediatric Nurse Practitioner 1987

Monday, July 21, 2014

OMG, Why My Child; What to do After a Diagnosis

My friend called. Her grown son was just diagnosed with a rare brain tumor.  The tumor of the pituitary gland was a benign (not cancerous).  This type of tumor increases the amount of growth hormone and  causes acromegaly or gigantism. Her son’s, very on the ball, GP noticed symptoms, large hands and feet, growing facial features and referred him appropriately for the correct tests that confirmed the diagnosis.  Now her son is making plans for surgery and his mother is frantically checking online for all the information she can get.  

What I did when I got the call to help research this rare disorder for my friend, I started with Google and I looked on the  Medical Home Portal, which collects medical information  about rare medical conditions, and The National Organization for Rare Diseases NORD.

I looked for the specialists for this disorder:

I checked for the disorder's patient and family support organizations:
In this case the support organization based in Australia.

I checked for the experts in the field (who writes the papers on the rare disorder).

And finally I found medical guidelines:

That is what I did as a nurse practitioner.  Now consider what should a family do when a diagnosis is made.  

Find the specialist for your child’s diagnosis.  If the diagnosis is very rare.  There is some doctor or group of doctors in the world who takes an interest in your diagnosis.  Most of those doctors are associated with a medical school. Look for who writes the medical articles on the diagnosis and who is on the board of the patient support groups for your diagnosis.

Be careful of online quacks and the scary worst case personal stories.  Try to learn as much as you can from respected medical persons and from persons and families who have helpful advice from personal experience.  Find helpful resources through your doctor or the agency who supports families with your diagnosis or disorder. 

Consider a second opinion, especially if an operation is called for.  My friend’s son is living in Australia at this time.  Sometimes second opinions can be offered by review of charts, lab and MRIs.  John Hopkins has neurosurgeons who offer long distance second opinions after the patient or patient’s family gathers the required forms. Of course the John Hopkins neurosurgeons are specialists for adults.  Other medical schools offer the same type of second opinion services.  

If your child needs a surgery for a rare problem ask if the surgeon has performed this surgery before.  Sometimes older surgeons have seen more rare diseases, on the other hand, sometimes the younger surgeons know the new surgical techniques. Find a medical school with specialists, the latests equipment and of course the nurses who love to take care of children with special needs.

The Medical Home Portal has a page entitled When your Child has Been Diagnosed with a Disability or A Special Health Care Need. Read the whole article.  The following are the suggested topics to consider:


  • Take a deep breath and remember your love for your child and family
  • Educate yourself about the diagnosis
  • Beware of the Internet
  • Find resources and support in your area
  • Start lining up services
  • Understand the laws that may apply to your child
  • Take care of yourself
  • Take care of your family
  • Educate your child about the diagnosis
  • Take another deep breath.



Let me know if you think of some other ideas for the time after that first diagnosis.  Of course always hug your loved ones, call on your friends for help and take deep breaths. Remember that each loved one handles problems differently.  Be respectful and tolerant of those differences and if needed get counseling by a professional to help your family through the difficult times.  

Tuesday, May 6, 2014

Smoke, Fire, and Immobility

Fire!  A scary thought for everyone, but for a person who is immobile fire and smoke must be terrifying.  Most families know to have a smoke detector on every level of a home and in all bedrooms, but do they also know how to get a loved one out of the house in an emergency.  

Safe Kids USA is a wonderful resource to learn and teach about child safety.  They gather all sorts of data concerning child safety and use that data to create safety education programs.

One education program is specifically designed for children with disabilities. Visual, hearing, cognitive impairments are considered along with immobility.  Safe Kids created a video entitled "Fire Safety for Families with Children Who Are Immobile".   The family is encouraged to have a plan for emergencies with fire.  For a quick exit in an emergency use a blanket to get your immobile child out of the house.  If they are too big to carry, then drag them out on a blanket!

The pediatrician I worked with at a clinic for children with special needs was especially fascinated with this idea.  She had never thought of how to get a large immobile person out of a house in an emergency.   

When I was a child, my friend had a sleepover.  For some unknown reason we watched a movie about developmentally delayed children who lived in an institution.  There was a horrible fire and the children couldn't get out.  That horrid movie has stuck with me to this day.  I became one of those safety conscience nurses (also called nutty folks) who always check for the exit at the movie theater, stores and large buildings and of course I never stay at a hotel without checking for a working smoke detector.  

So check your Smoke Detectors  (and Carbon Monoxide detectors) monthly and be prepared for emergencies!



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Here are some other Safety Tips for  Children with Mobility Impairments:
(I live in Texas. I think I can safely mark off my list the rock salt to decrease slippery areas in the ice and snow.)



Safety tips for the Mobility Impaired Child
Talk with your child’s care team including your child’s health care provider, school nurse, principal, teacher, school staff and other caregivers.
Involve your child. Talk about the steps you’ll take. Ask your child “what if” questions to help them learn to problem solve.
Be a role model. Children will do what you do. If you wear your bike helmet, they will too.

Fall Safety Equipment

·      Does your child’s adaptive equipment fit well? Do you have all the safety support gear that it needs such as brakes, belts, etc.?
·      In the winter, you may want to carry rock salt in a backpack to throw on icy spots. 

At Home

·      Do pathways provide clear access throughout your home? Are they cleared of throw rugs, worn carpet, low tables, and electric cords? (Electric cords can be taped to the floor).
·      Items like handgrips, ramps, and padded furniture may make your home easier to navigate.
·      Are play spaces easy to get to? Does your home have soft surface areas for play?
·      You can secure or tape carpets and rugs to the floor and large furniture can be secured with furniture straps to the wall.
·      Install a nonskid mat or no-slip strips and grab bars in the shower and bathroom. A shower or tub seat with a strap may be of help.
·      Do you have no-slip surfaces or strips on stairs? Do your stairway railings extend beyond top and bottom step.

Safety Tips for Children who use Mobility Devices

At School

Talk with your child’s teachers, school nurse and key staff about your child’s needs. Discuss things like permission to use the elevator and other areas of the building. Include these in your child’s IEP or IHP (Individualized Health Plan).

Fire and Burn Safety

·      Create a fire escape plan for your home. Include steps to assist your child and to transport any needed medical or mobility equipment. Talk about and practice your plan with the whole family. Include plans for school, places of worship, theaters, and stores.
·      If you can, teach your child how to stop, drop and roll with their mobility device. If applicable, teach them how to use a blanket to put out a fire. Help your child practice getting from the wheelchair to the ground and then rolling.
·      Do all adults and older children know where the fire extinguisher is and how to use it? Tell your local fire station about your child’s evacuation needs and medical equipment.
·      Teach your child to stay low in smoke. If your child is not able to lower themselves to the ground, teach family members how to help them get to the floor and onto a blanket. Use the blanket to pull your child away from a fire. Practice this with your family. Include going up and down stairs or all levels of your home. If your child cannot use their arms, a plastic sled can give the upper body more support for going down stairs in an evacuation.
·      Include a special meeting place outside your home in your plan where all family members can meet in case of fire

Water Safety

Find the right life jacket for your child’s needs. There are many kinds of adaptable life jackets available. Have your child try them on to see what works best. For information on adaptive life jackets visit http://www.pfd-a.com/index.html.
Depending on their skill level in the water, some children should always have an adult within arms’ reach in the water (even if there is a lifeguard on duty). Check with your child’s health care provider about your child’s level of water safety skills (i.e., can swim independently, can right himself, knows about deep water, can blow bubbles, etc).

In the Bath

Mounted grab bars may provide extra support when getting in and out of the tub. Learn how to safely put your child in the tub without hurting your back.

Car Safety Resources

Car Seat Guide for Children with Special Needs, American Academy of Pediatrics: provides information on child restraint options for children with special needs, how to use the seats, transporting older children, premature babies, and children with casts or that use wheelchairs.
Vehicle safety for people who use wheelchairs, www.travelsafer.org/
Transporting Children with Special Health Care Needs, American Academy of Pediatrics, http://aappolicy.aappublications.org/cgi/content/full/pediatrics;104/4/988
E-Z-On Products, Inc. of Florida 1-800-323-6598, www.ezonpro.com/products.shtml Adapting Motor Vehicles for People with Disabilities, U S Department of Transportation.
1-888-DASH-2-DOT or www.nhtsa.dot.gov/cars/rules/adaptive/brochure/brochure.html
Bike Safety
Find a bicycle or tricycle that meets your child's needs. There are many styles of adapted bikes and trikes that your child can try. Visit Adapted Bicycle Product List for Persons with Special Needs at, http://rileychildrenshospital.com/document.jsp?locid=1416
For More Information:
Keeping Children with Special Needs Safe in the Home from Safe Kids and the MetLife Foundation. A series of safety videos highlighting how you can take precautions in your home to help prevent injuries to children with physical, developmental or cognitive disabilities http://www.safekids.org/safety-basics/special-needs/

Adapted in part from the Diagnosis Related Injury Prevention Suggestions developed by the Ohio Dept. of Health. Revised with permission by the Center for Children with Special Needs, Seattle Children’s Hospital.

Wednesday, April 30, 2014

Moving Time for the Child with Special Needs

I am moving from one part of town to another.  That made me think of the difficulties families with a child with special needs face; changing schools and friends, explanations, appointments, new doctors and new teachers.  Moving is very intimidating.

I found a web site that has some wonderful information for parents of special needs children.  It was the National dissemination Center for Children with Disabilities.  Unfortunately that agency is closing down.  Probably sequestration at work.  The National Dissemination Center for Children with Disabilities funding was cut September 2013 and the web site will shut completely down in September 2014.  Perhaps if the agency had a better title. Dissemination is too big and sounds too wordy.  Most folks don't know what Dissemination means.  This organization was under the Office of Special Education Programs and now it is closed.  So copy and gather what you  need from this site.  The Center for Parent Information and Resources will take over the "dissemination" of this information at the Parent Center Hub.  I am not sure that name is any better.  It is moving time for the web site as it is moving time for me.

Here is a link to the page concerning "Moving to a New Location".
I put a copy of the page here because the web site is shutting down.
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Moving to a new location can sure disrupt your life! For any family this can be a time of chaos. There is the adventure of newness but also a maddening confusion. Everything and everyone is certainly somewhere, but where? You have to find new grocery stores, new roads, new schools, and new doctors. You have to unpack and reorganize your home and your daily routine. You have to make new friends, meet new neighbors, and establish new systems of support and help.
For a family with a child who has special needs, the confusion can be particularly stressful. To avoid some of the less desirable “adventures,” it may be a good idea to map out your strategy before you move. This is especially important regarding school and your child’s special education needs.
Presented here are some questions you might ask yourself, preferably well in advance of your move. The answers given contain suggestions for helping your family make a smooth change from your child’s present special education placement to the new one. These suggestions are derived from personal experience, contact with families who have met the “challenge,” advice from administrators, and other authorities and research.
There’s a NICHCY’s State Resource Sheet for Your “New” State
But before we start with the Q&A, we’d like to suggest that you take advantage of NICHCY’s State Resource Sheets. These list important resources in each state and are divided into sections: state agencies, disability-specific organizations, organizations especially for parents, and other. Go to our State Organizations Search (at http://www.nichcy.org/state-organization-search-by-state), select your new state (the one you’re moving to) from the drop-down menu, and the State Organizations will automatically appear.
We’re going to be referring to the State Organizations Search throughout this article, and we promise it’ll come in handy as you plan ahead and when you actually move!

Q: Will the school in my new neighborhood offer special education programs?
A: Yes. There are several federal laws that require public schools to provide a free appropriate public education (FAPE) to all children, regardless of handicapping condition. The most notable of these is the IDEA, the Individuals with Disabilities Education Act. IDEA is the nation’s special education law. It sets minimum requirements that all states have to follow. States then develop their own special education laws and regulations. Different states may use different words to describe certain disabilities or programs. They may have differing eligibility requirements and different processes of evaluation and placement. Some states offer programs not available in other states, and rural regions may have different systems for providing special education than suburban or urban areas. But they all must offer the same basic services, in keeping with the requirements of IDEA.
Q: How can I learn about my “new” state’s laws and regulations?
A: Each state publishes information about special education in their state. You can contact the State Department of Education, Special Education Division, and request a copy of their policies and procedures. This information may also be available online, at the State Department of Education’s website. Using NICHCY’s  State Organizations Search for the “new” state (the one you’re moving to), you’ll find the State Department of Education listed in the first section, under the header “State Department of Education: Special Education.”
If your child is an infant or toddler (ages birth to the 3rd birthday), you will need to contact the lead agency for early intervention programs in the new state. In some states that’s the Department of Education, but in other states it may be the Department of Health or Human Resources. Again, the State Organizations Search for the new state will come in handy. You’ll find the contact information for the early intervention system in the new state listed in the first section, under the header of “Programs for Infants and Toddlers with Disabilities: Ages Birth through 2.”
Q: When should I start this process?
A: The most important step is to start early. As soon as you know or are seriously considering moving to a new state, you can start to get ready. You may not know which town or school district you will live in, but as long as you know the state you can begin.
If you are moving to another location in the same state, much of this information is still important. Even within a state, different school districts may vary in their policies and programs.
Q: Will the new school use my child’s IEP from the old school?
A: That’s a very good question, and an important one. The answer is: It depends.
Let us explain a little, since this is a question often asked by parents. Three different situations are possible here and all presume that you make the move in the same school year. Which of these situations mirror your own?
You move within the same state, stay in the same school system, but your child will be going to a different school. In this case, the same school system is responsible for your child’s education, just in a different school. Your child’s IEP would be transferred to the new school and implemented as written.
You move within the same state, but to a different school system (a different school district, say). This means that a different agency becomes responsible for your child’s education. That school system has the choice of adopting your child’s IEP as is or it can develop its own IEP for your child (with your involvement as a team member). Until it opts to develop its own IEP,  the new school system must provide FAPE to your child, including services comparable to those described in the IEP developed in the previous school system.
You move to a different state altogether. Obviously, a different agency becomes responsible for educating your child. That new agency must provide FAPE to your child, including services comparable to those described in the IEP from the previous state, until–and this is the new agency’s option–it conducts a full and individual evaluation of your child to  determine if he or she is an eligible “child with a disability” in that state. The agency may decide that an evaluation isn’t needed, in which case it is not required to conduct one. Should the agency decide to evaluate your child, it will need your permission as parents. If your child is found eligible for special education services in the new state, a new IEP will need to be developed according to local policies.
But we’re getting ahead of ourselves, aren’t we? You haven’t even moved yet! You’re just getting readyto move…
Q: What do I do first?
A: Check all your child’s records. Is the Individualized Education Program (IEP) or the Individualized Family Service Plan (IFSP) current, or is another one due soon? If there should be a new IEP/IFSP about the time you plan to move, request that the new IEP/IFSP be written earlier to facilitate your child’s placement in the new school. If you request the IEP/IFSP several months in advance, your current school should not have a problem moving the meeting up. You want to be sure to schedule this meeting at least 6 weeks before you will move, so there will be time to get the information finalized and have copies of the new IEP/IFSP signed and ready to share with the new school or early intervention program.
Is a triennial reevaluation of your child due this year? If yes, again contact your child’s current school well in advance of the move and request the triennial reevaluation be COMPLETED at least 6 weeks before your moving date. Again, this will insure that you can get signed copies of the review to take with you to the new school district.
Talk to your child’s current teacher(s) and therapists. Ask if they could write a letter of introduction to the new teacher(s) and therapists which describes your child, his strengths, areas of weakness, and successful approaches to working with him. The new teacher(s) and therapists will be able to incorporate successful ideas into their programs immediately. Again, be sure to make this request well in advance of needing it, so the teachers and therapists have plenty of time to do this.
Has your child had a physical this year? If not, visit your current pediatrician and have this done at least 6 weeks before you move. Be sure your child is up to date on all vaccinations and regular “baby shots” and that you have a complete record from your pediatrician. If you use a clinic, public health system or Indian Health Services for medical care, be sure they have given you a complete record of your child’s shots and a copy of the current physical.
If your child is taking regular prescription medicine or has prescriptions for any therapy, get copies of these medical reports. Be sure you have at least a one-month supply or more, if possible, of any prescription medications before you move so you won’t have to find a new doctor, get an appointment and need a new prescription in the middle of all your other concerns. Make note of how long this medication will last so you can allow yourself time to schedule new appointments when you move. If you know you will need to see a doctor very soon after you move, try to make an appointment before you move so that will be settled.
If your child is seeing any specialists, such as neurologists, allergists or the like, also be sure you get a complete set of medical records from these physicians to take with you. Also contact your child’s dentist and take those records with you.
You may want to ask your current doctor(s) for referrals to doctors or clinics in your new location. When you tell your child’s doctor you are moving, ask for any information that may be helpful to the new doctor you will be seeing. Ask if the new doctor can call the current doctor if there are any questions or topics that need to be discussed. If you are interested in having your child’s current doctor continue to be part of the medical team, discuss this option, too. You can keep the current doctor informed by sending regular medical reports so that he/she can consult with you and the new doctor about your child’s needs and progress.
Q: What else should I do?
At the state level.
A: At the same time you are checking and collecting all your child’s records, get a copy of the “new” state’s special education guidelines and policies. You will want to pay special attention to eligibility requirements to be sure you have all the paperwork you need when you arrive. Be sure to contact the new state as soon as you know you will be moving; it may take 6 to 8 weeks to respond to your request for information.
At the local educational level.
If you know which county you will be moving into, request a copy of any information they have on special education. Tell them you will be moving into their county and that your child is currently receiving special education services that you would like to have continued in his/her new school. Tell them the age of your child, the nature of his/her disability, and the services he/she is currently receiving, including any therapies or special transportation needs. Ask for information on eligibility requirements for similar services in their schools, and what records they will need. Ask if it would be helpful to send your child’s records in advance and, if so, to whom should they be sent (remember, always keep copies in your home file). You can also request a meeting within the first week of your arrival in your new town. You might ask them about transportation arrangements so the bus will arrive when your child is ready to start to his/her new school.
At the local school level.
If you will be visiting your new location before you actually move, you may be able to get information on schools and medical facilities while you’re in town. It is most efficient to meet with the special education staff when you’ve got all your child’s records collected and up-to-date. However, if you have the time, it might be interesting to visit special education programs in the new school district, as well as talk to parent groups. You can identify parent and disability groups in your new location by using NICHCY’sState Organizations Search for your new state.
Q: Why get in touch with parent or disability groups?
A: Often families want to know the “best” school or the “best” program for their child. Obviously this is a difficult question, since one person’s idea of best may not be the same as another person’s. Often, talking to families who have children with similar needs can offer insight into the options. Parents can talk quite informally about what they like and dislike about the various programs, staff, and schools in a community. Parents can also talk about non-school topics, like day care, respite care, recreation, medical facilities and the like.
Even if there is not a parent group or disability organization for families just like yours, you may find it useful to talk to other groups. The opinions of other people who are using the same systems (schools, therapists, buses, etc.) can be very useful. Pick up local newsletters too; they have information on local news of importance to families concerned with disability issues.
Q: What about early intervention and preschool programs?
A: There is a great variety of services available for very young children. Be sure to check with the new school system to find out what early intervention programs exist for children your child’s age. If your child is moving from an early intervention program to preschool the changes may be significant. Again, inquire early and give details of your child’s needs and current services. The NICHCY State Organizations Search will give phone numbers of state offices in charge of early intervention programs and programs for preschoolers with disabilities (ages 3 to 5).
It may be helpful to talk to your child’s current therapists and/or teachers to discuss what would be provided in the next age group. In other words, if your child is almost 3 years old, his or her program might change even if your family were not moving. By talking to the current staff you will have an idea of what to look for in the new school system.
Q: What about high school students, transition and work opportunities?
A: The current IEP should be useful in transferring information about transition needs and plans. If your child is in a vocational program, or plans to be next year, this may be a good time to have a vocational assessment done. Often vocational assessments include the observations of the people teaching/working with your child, so the comments of the current staff would be important. Conducting such evaluations is time consuming and would best be done before the move. The results will then be immediately available to help professionals at the new school determine the most appropriate placement of a student they do not know.
If your high school student does not have transition information in his/her current IEP, work with the present school special education staff to develop a transition plan in the updated IEP you will request before moving. Again, be sure to make this request far in advance of the moving date to allow time for the entire team to put together a plan.
If your son or daughter is within 2 years of finishing high school, it may be very useful to be sure triennial reevaluations are up-to-date. Even when a student is nearing the end of his/her school years, a current evaluation is important in transitioning him/her to adult services and work. Be sure your child has had a triennial within the last two and a half years. If not, request that this be done before you move. The information collected will be very useful in planning new programs, and the people who know your child and have had experience working with him/her may be the best ones to conduct this evaluation.
Students who are working in work sites identified and/or supervised by either the special education team or community services board (or other formal job placement arrangement specifically for people with disabilities) will also require complete records of their work placement, work experience, accommodations, transportation and the like. Again, it may be very useful to ask the current work supervisor to write a letter describing your son’s or daughter’s strengths, needs, and most effective strategies for achieving success on the job. There is a great deal of variation in work experience arrangements in different communities and different states, with different agencies delivering these services. When you contact the new school district, you will need to ask who is responsible for organizing work experience programs for students whose needs are similar to those of your child. When you contact that person, either in person when you arrive or by email before then, be sure to pass along all the information you have assembled about your child’s current placement.
Q: What do I do about Supplemental Security Income (SSI) Benefits?
A: States vary in the amount, or rate, of SSI benefits they pay and also in eligibility requirements. This means that one state may pay more or less than another, that a child eligible for SSI benefits in one state may not be eligible for any benefits in another state, or that a child who had been denied SSI benefits in one state may in fact be eligible for benefits in the state to which his family is moving. Depending on where you move, you may need to be interviewed by the local Social Security office, either in person or by phone. To find out about SSI benefits in the new state, call the Social Security national toll free number, 1-800-772-1213 (Voice); 1-800-325-0778 (TTY).
Social Security advises that families should not file for benefits in the new state until they moved and have an established address. According to Social Security, changing an address before a family actually moves can cause a lot of confusion if a family s plans change, which frequently happens.
Q: What do I do if I need to move in a few weeks and don’t have much time?
A: Essentially the same things need to be done regardless of how much advance notice you have of a move. It is certainly much easier to get all this accomplished with several months time, but there are some short cuts.
All the records about your child need to be collected and duplicated. Letters from teachers, therapists and other professionals working with your child are very helpful and can be requested before you move and mailed to the new address as soon as possible. Updating IEPs, triennials, vocational assessments and the like may not be possible. However, you may want to talk to the people who would be involved in these evaluations and ask them to write you a letter explaining any changes or suggestions they would have for a new IEP, etc. Again, these letters can be requested as soon as you know you’ll be moving and be mailed to the new address, when they are completed.
Instead of writing to the special education staff in the new state and school district, you may want to phone them. You can ask them to mail information to the new address, and you can request an appointment as soon as possible after you arrive. You may want to take a few minutes to briefly explain your child’s current special education program, so they will know with whom to schedule your appointment. Rather than mailing records in advance, you can carry these with you (don’t pack them) and present them at your first meeting.
Explain to your child’s doctor(s) and dentist that you will be moving very soon and that, unfortunately, you were not given much advance notice. If your child has not had a physical within the past 12 months or is scheduled for any treatments, shots, or the like in the next month or two, you may find it useful to see the current doctor before you move. Hopefully the receptionist will be able to schedule an appointment. Also explain that you will need to have medical records forwarded and ask if you can pick these up when you come in for the appointment. If there is not enough time, you can request that the records be mailed to you at the new address. Be sure to fill all needed prescriptions.
If you are rushed with your plans, it may be more important than ever to make a notebook of needed names and phone numbers. Keep a record of the names and address of the people you asked to write letters or send information, so you can easily contact them if the requested papers do not arrive. List all appointments you make with the new school staff and make a list of the information they ask you to bring to these meetings. Don t forget to ask for directions to the place of the meetings.
Q: What if it’s summer time, Christmas vacation or spring break?
A: Clearly, it is much more difficult to reach the people you need to talk to if school is closed. Vacations can prolong the time necessary to reach the right people or get the records mailed.
However, school offices are generally open the months of June and July even when school is closed. You should be able to get records and information during this time. August may be the most difficult month, since this is when many offices close for vacation. It would be good to try to reach all school people before or after August.
Parent groups may also be less active in summer or during special holidays. You can write or call, but it may take longer to get a response. Don’t give up; they’ll be back to business by September or after the holiday.
If you are looking for teachers or therapists in your new location during the summer, many school districts will not give out their home addresses. However, you can send a letter or email stating your needs to the new school and call to ask them to forward it to the teacher or therapist’s home. In your letter you might ask the teacher or therapist to call you and give your home number.
Q: What if we are a military family?
A: Essentially the same information applies to families in the military who are moving within the United States. There are people who can offer help specifically to military families.  The Department of Defense Education Activity (DoDEA) is an important source of information to military families who are moving. We refer you in particular to DoDEA’s website discussion of “Relocating: Things to Remember” at:
http://www.dodea.edu/Curriculum/specialEduc/relocation.cfm
Talking to a parent group or disability organization of families like yours may be useful. There is also a parent organization just for military families. Specialized Training of Military Parents (STOMP), can provide military families with information about their rights and responsibilities for achieving appropriate educational services for their children wherever they may be located in the U.S. or overseas. Contact this group at: STOMP PROJECT, PAVE, 6316 S. 12th Street, Tacoma, WA 98465, (800)-5-PARENT. Visit STOMP’s website at: http://www.stompproject.org/
Q: What do I do with all these records?
A: Duplicate them. Make sure you have at least two full sets of records and information on your child. You will need to give records to the new school and you should always be sure to maintain a complete set of records for your personal files. When you need more copies of records, you can use your file to make them. NEVER give away the only copy of any piece of information. When you leave a school district, they will not maintain a file on your child forever; at some point these records will be discarded.
Q: Should I mail the records to the new school?
A: If you have successfully contacted the new school system staff and arranged for eligibility and placement meetings, you may want to arrange for official school records to be sent to your contact person. This could give you a headstart on identifying the most appropriate educational program. Again, the goal is to smooth the way for transition into the new school and the more information the new school has about your child and his/her needs, the better.
If you do not yet know who will be handling your child’s special education needs, you may want to carry the records with you and personally deliver them at your first meeting with the new school staff. Generally, schools will need original records, but copies can be delivered for use until the official transcripts arrive.
If you do decide to send records in advance, be sure you keep a complete set of the records for your personal files. You may need to provide information to other people, like doctors or therapists, and you will then be able to make duplicates of your file copies.
Q: Should I pack the records?
A: It would be a good idea to hand carry your child’s current records, like this year’s IEP and medical papers, with you. Packed boxes may take time to arrive and unpack and the goal is to meet with the staff of the new school as soon as you arrive to facilitate placement. So buy a large sturdy folder which closes securely and use this to transport your child’s records.
You can pack records from past years. These probably won’t be as immediately important. However, medical records should be kept handy in case of any emergency, so make sure you label the box that contains these records.
Q: How do I keep all these records, meetings, eligibility requirements, and emails straight?
A: Buy a spiral or looseleaf notebook to keep track of all the things you are doing. Put the names, titles, and phone numbers of all the people you talk to in your notebook, along with a few lines about what you discussed and any recommendations that were made. It may be difficult to remember all the new names at first, and this will help you keep your information straight. You can also use this notebook for appointments, directions, and reminders of topics or questions you want to discuss.
Since appointments and meetings will be held in a town you may not be familiar with, it might be a good idea to ask for directions to the meeting place. You can put these directions into the notebook so you’ll have them next to the notes about the meeting.
Q: How long will it take to get my child settled into the new school?
A: This is another hard question to answer. With careful preplanning, the new school district should be able to arrange for an interim placement immediately. They may want to administer some of their own evaluation tests and certainly will want to develop a new IEP. However, in the meantime, the current IEP can be used to avoid an interruption in school.
You should inquire about transportation and visit the new school as soon as you can. You can call the new school and schedule a time to observe; at the same time, schedule a half hour or so to introduce yourself to the new teacher. Establishing a positive relationship with the new staff is always helpful. Let them know that you are interested in working with them to arrange for a successful placement and that you are available to discuss any questions or concerns they may have. Again, the old school will need to send original records. Give them letters and/or reports from the former teachers and therapists, and be sure to keep copies for your files.
Q: What if there are problems, if my child’s placement is delayed, or if I disagree with the placement?
A: Any time you have concerns about any aspect of your child’s special education program, there are established methods for addressing your concerns. Talk to your child s teacher and the special education staff to arrange for a meeting. You may want to review your child’s IEP, review progress to date, discuss additional evaluations, request curricula specialists to review your child’s progress, etc.
The information provided by the new state should include guidelines for addressing problems. Follow these guidelines. This is also an occasion to contact the parent and/or disability organizations in your new location. They, too, may be able to offer suggestions on effectively addressing the concerns you have.
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Checklist

Use this list to check off each task that you need to complete. Just cross out any tasks that don’t apply to your family.
____ Get a notebook to keep track of everything you’ve done or will need to do.
____ Give your child’s current school your new address.
____ Find out if all school records are up to date.
____ Request copies of all information in your child’s files; be sure all evaluations, assessments, reports, IEPs, therapist’s reports, and any related documents are there.
____ Request updates on any school records that need it (IEPs, triennials, vocational assessment, transition plans, etc.)
____ Duplicate all school records. Your school may provide this service or you can frequently find duplicating machines in the public library.
____ Inform your child’s teacher(s), therapist(s), employer(s), counselor(s) and other professionals working with your child that you will be moving. Ask them to write letters about their experiences with your child and any recommendations or observations that they have.
____ Call your child’s doctor(s) and, if necessary, make appointments.
____ Call your child’s dentist and, if necessary, make an appointment.
____ Request copies of all medical records, including those of any specialist(s) your child is seeing. Duplicate these.
____ Call the Social Security toll free line, 1-800-772-1213, to find out about SSI benefits in your new state.
____ Fill all prescriptions, so that you have at least one month’s supply.
____ Contact the Department of Special Education in the new state and/or local school district. Request information about policies, procedures and eligibility requirements, and request an appointment for the week of arrival in the new location.
____ Contact the new school, if possible, and arrange for eligibility and placement meetings soon after you arrive.
____ Contact local parent and/or disability groups in the new location.
____ Get a large sturdy folder which closes securely in which to transport your child’s records.
____ Put all records in a safe place so they won’t be packed or lost (you could put them in the car right now or put them in your hand luggage).



Friday, April 18, 2014

Global HELP for Cerebral Palsy

My daughter, who is interested in medicine, grew up with medical magazines lying about the house. While other families had magazines with pretty photos of beautiful living rooms or pretty clothes.  My coffee tables had magazines with oozing sores and gross rashes. Instead of a 10 questions about relationships, our home had guess the rash questionnaires. When we would go on vacation I would insist on going to the Leper museum in Norway or the Old Medical Theater in London to view the old medical instruments.

 My daughter went to Ghana over Spring Break, with Projects Abroad,  to get some practical experience providing health care.  She ended up cleaning sores and changing bandages at a leper facility.  She had a great time.  That is what happens when you expose your child to medical magazines strewn about the house instead of Southern Living magazine.  If I had subscribed to House Beautiful magazine do you think she would have been an interior designer?

Here in the U.S. we tend to think we have the best medical care in the world.  Or at least that is what I see on the news.  Finding medical information is sometimes difficult.  Many publications and articles require a subscription.  This must be even more difficult if you are a provider in a third world country.
  
I have discovered a wonderful website named Global Help whose mission is:

"The Global-HELP Organization, commonly referred to as HELP (Health Education using Low-cost Publications), provides free health-care information to developing countries and is committed to making medical knowledge accessible worldwide. Thanks to advances in software and communication, we can now make these publications available to places and people throughout the world. HELP is a humanitarian organization that is non-political and values racial, cultural, and religious diversity."

The Global HELP web site was developed by Drs. Lynn and Lana Staheli after the 9/11 terrorist attacks to help disseminate free medical information to third world countries and to improve the health care of people around the world.


Global HELP has a wonderful PDF on Cerebral Palsy with lots of photos and descriptions of care.  Take a look over their selection of medical videos.