Frequently Asked Questions

1. Where do I begin after my child's diagnosis?
2. What is "Universal Housing"?
3. How do I deal with being over-billed by my insurance company?
4. How do I deal with staff not following my child's prescribed IEP?
5. Military - How can I get medical treatment in my local area instead of traveling to the nearest base?
6. How can I find out my current status on the waiting list to receive DSPD services?
7. What is the waiting period for response to an IEP meeting request?
8. What is an Architectural Overlay?
9. Is there any way you could add more links to my state?
10. Do you have some suggestions where we can donate our medical equipment that is still in good condition?
11. Why are you moving with a wheelchair out into the middle of nowhere?
12. How do your Hints and Tips work? And can I submit a tip?
13. How familiar are you with the Exceptional Family Member Program (EFMP)?
14. Is it possible for me to enroll in a Medicaid program and still utilize TriCare?
15. Can you tell me if TriCare ECHO is a Medicaid/Medicare program?

Question:

Dear Linda,
I have a 3-year-old child who has just been diagnosed by his Primary Care Physician as having Autism. I have no clue what to do next. Any suggestions?

(K.B.-Roy, Utah)

Answer:

Dear K.B.,

The first step with any new diagnosis is getting a second opinion from an expert in the field relating to that diagnosis. With Autism, an evaluation at the nearest Pediatric Neurobehavioral Clinic is most appropriate. If you dont have a pediatric medical center available, contact the nearest University medical center in your area. Here in Utah, contact Primary Childrens Medical Center.

Begin gathering copies of your child's medical records and start a file (see "Getting Started" page). Begin learning about your child's diagnosis and the things you as a parent can do to help. (see "Research" section for basic resources to get you started!)

The next step is deciding where to go after the second opinion has been given. You have two choices.

1. If the second diagnosis agrees with the first diagnosis then you will need to meet with your physicians and develop a plan of action for your child.
2. If the results are inconclusive you may need to pursue further testing before receiving an accurate diagnosis that can be agreed upon. Make sure to keep accurate copies of all your childs records during the entire process.

Once you have an official diagnosis, begin developing your long-term plan. This should include immediate enrollment in an Early Intervention Program. Preferably one that deals with children with Autism. Your physician should have a referral number for you. Ask him if he does not volunteer it. You may also call the Administrative Offices of your local school district and they can assist you as well.

You may need to obtain other treatment for your child as well. Treatments such as Speech Therapy, Occupational Therapy, Physical Therapy, Dietary analysis, Behavioral Therapy etc. may also be needed. Keep in mind each child is unique, will need his or her own special course of treatment and the process takes time.

If you are feeling overwhelmed, begin with the most outstanding problem first, get started treating that and then add in other treatments as you begin to get comfortable with working with your child. Your Physician can assist you in deciding what needs to be addressed first.

We also suggest attending a support group for parents with children with similar problems. Parents are terrific resources of information, insight and comfort to other parents. Dont forget, you are not alone!

Please don't hesitate to contact us with any additional questions you may have.

Linda - SNRP

Question:

Dear Karen,
I keep hearing the term "Universal Housing" or "Universal Design" being used more and more. Could you explain exactly what that means?

~(R.K., Ogden, Utah)

Answer:

Dear R.K.,

The specific definition of "Universal Design" would be "The design of products and environments to be usable by all people regardless of physical condition, to the greatest extent possible, without the need for adaptation or specialized design."

No one should have to feel like they are in the hospital when they are at home. Incorporating wide open spaces with special attention to halls and doorways in no way hinders those with walking capabilities but make the space usable to those who may be in a wheelchair. Finding finish products for a home that are both cost effective and adequately suited to the needs of the family without making a home appear overtly institutional creates an environment that is both user friendly and warmly inviting which also contributes to an appropriate home setting. Did you know that a specifically handicapped design tub can run upwards of 65% more in cost than an over sized standard soaking tub which has been elevated to the correct service height for the individual with ADA grab bars installed? Universal Design is accomplished by considering the physical needs of the family in coordination with the products available today in order to create an appropriate home environment that is comfortable and inviting that serves the purpose for which it was intended.

~ Karen - SNRP

Question:

Dear Linda,
Our insurance keeps over billing us for our son's medicines. We've called them several times and they admit we were overcharged. They tell us they'll send us a check. Each time we call we find they have not sent any checks and they tell us the same thing....."we'll send this notice on to the department that can do something about it". Last time we tried to talk to someone in charge who could do something about the situation they stonewalled and said there was nothing they could do. They stated that "internal changes" were going on and until they were done they wouldn't be sending us any checks either. This seems like fraud if they know they are overcharging us and then still do nothing to change it. We don't know who else to talk to.

~(P.G., Castle Rock, Colorado)

Answer:

Dear P.G.
Call your state insurance commission and file a complaint. Be prepared to send them copies of your statements/receipts, write down conversations and dates ( if you can remember them) along with who you talked with and what the general conversation was. Let them handle the complaint from there. And the next time you call the Insurance company, get a name, write the date and the conversation down. Don't tip them off, just document, document...... You'll get a check.....

~ Linda - SNRP

Question:

Dear Linda,
I am having trouble enforcing my childs IEP at school. I have been making surprise visits and finding her sitting in her wheelchair doing nothing while the assigned aide is off doing other things. My child is not being allowed to use the restroom during the day and I am afraid she will become ill because of this. What can I do?

~(K.R., Salt Lake City, Utah)

Answer:

• School nurse
• At least one of your school administrators (there should be one in attendance at the meeting regardless, anyway)
• The Special Education Coordinator for your District
• The Special Education Coordinator assigned to your school.
• All classroom teaching staff and aides assigned to work with your child during the day.
• Any other staff (therapists, councilors etc.)

Once these individuals are on the list they MUST be in attendance at that meeting. Call the school principal and the coordinator immediately to get a meeting time set up. Be sure to tell them you are coming in to discuss possible negligence in the classroom.

Step #2. Sit down and write up all the observations and dates that you have made over the last few weeks. I recommend keeping a Classroom Visit Journal. * Tip: Any time you visit your childs classroom I recommend documenting the date, the time, classroom activity going on, who is or is not working with your child, what your child is doing compared to the rest of the group and what your child should be doing at the time of your visit. Document, which classroom staff are or are not working with your child. Note any physical conditions of your child as well. If you go into the classroom after lunch and your child has not been taken to the bathroom, grab the classroom staff responsible and insist your child is taken IMMEDIATELY to the rest room. Notify the school administrator if this is not done. Document it. Remember. "If it isn't on paper, it didn't happen". . .

Step #3. Review your childs current IEP as it is written. Your IEP documentation should be either in your file or a notebook and be easily accessible. (I keep mine on my kitchen counter. I can grab it on the way out the door to do pop-in visits to the school.) If the current goals do not reflect the care your child should be receiving, write new goals BEFORE YOU GO TO THE MEETING. (See the "Forms" link of this website for pages that may assist you in documenting the goals for your child's IEP)

Step #4 Notify your family physician regarding lack of bathroom accessibility (lack of allowing your child to go) and get a written physicians order that states your child should be allowed to go to the bathroom whenever your child, you and your family physician dictates. Make a copy of this order and keep it in the IEP file. Failure to follow up on a physicians order is negligence and easy to take care of.

Step #5. If you do not have a daily communication book coming home each day, start one. Read it ever day when your child returns home after school. Remember. Any documentation, journal entries, IEP documents, classroom notes, Drs orders, phone call logs etc. are admissible court evidence. Start gathering it now and hope you wont need it. If you do, all your ducks are in a row.

I highly recommend you obtain a copy of the current federal publication " A Guide to the Individualized Education Program" published by the Office of Special Education and Rehabilitation Services, U.S. Dept. of Education. Click on the IEP section of this web site and go to the Introduction. Click on the federal website link and you will be taken right to the Guide section of the Federal Website. You can overview the entire Parent's Right's section and print your own copy of the Guide. I suggest you print a copy and keep it in your education notebook. Read pages 14-16 Reviewing and Revising the IEP of the guide. Pages 15,16 list steps to take for mediation and due process. Be familiar with these pages before going in to the IEP meeting you have set up.

NOTE: During the last IEP I held I made enough copies of the Federal Guide for EACH INDIVIDUAL IN ATTENDANCE. The Parents Guide published by my school district is abbreviated and set up in such a fashion that even those of us who spend a great deal of time reading regulations cannot understand it. I requested that each individual sign a statement showing they had received this document.

If you do your prep work you should be able to immediately take care of your childs needs. I suggest you continue to make pop visits to the classroom with your journal and keep a record. If the school continues to be negligent and/or non-compliant you can then begin the legal steps required for arbitration or Court action, depending on the severity of the offenses and impact on your child.

I know this is a very short answer to a complex question. Please feel free to contact me via the Client Support link in the Contact Us section and we can set up a phone call or personal e-mail for further suggestions or clarification.

~ Linda - SNRP

Question:

I am in an area where the nearest Base treatment center is over 3 hours away and very few providers in my area are TriCare providers. Is there something I can do to make it easer to access care in my local area?

~(A.A. Central Ohio)

Answer:

Dear A.A
Your best option may be to enroll in the TriCare Standard program, if you aren't already. Be sure to contact your Regional TriCare Customer Service center and request a list of TriCare approved civilian providers in your area. You may also consider requesting your local providers in your area to consider becoming TriCare providers. Contact your local provider and his/her office/business manager and make your request to them. Becoming a TriCare provider is not difficult but may not have occurred to providers not located near a heavily military populated area. Make the suggestion and see what happens! You may also want to lodge a complaint and request service assistance with your provider problem through your Regional TriCare office. Be prepared to spend a lot of time on the phone! (See Military Insurance under the Military button for suggestions).

~ Linda - SNRP

Question:

I have been on the list to receive respite services through DSPD for over 2 years. Is there any way I can find out where I stand on the list?

~(S.H. Roy, Utah)

Answer:

Dear S.H.,

Any time you are on a waiting list, no matter whom the agency or what the service is, it is vital to stay in contact your assigned caseworker and keep them updated. For DSPD services call your county DSPD office. If you dont know who your assigned worker is the main county office will have that information. Besides their name, be sure to obtain their contact information (phone extension, e-mail address, mailing address etc.) for use in reporting changes or requesting updates. Most agencies and caseworkers now have e-mail. This is a terrific way to contact your case manager and update them. It allows them to print a copy of your e-mail and place it in your file. Speeds up their paperwork and increases your chance of getting services. Be sure to contact them if your situation changes. Events like family changes, surgeries, hospitalizations, new medical problems and health changes for the main caregiver; job changes etc. will increase your chances of obtaining funding. But that wont happen if they dont know. Keep them updated at least quarterly!

NOTE: It was announced in early December by the Governors Office that the Utah State Budget would have additional surplus revenues available for disbursements to various government agencies. The State legislature will be deciding where the extra funds go during the January 2005 legislative session. Now is an excellent time to contact caseworkers with updates. Make sure your file is correct and up to date. Remember. Its the squeaking wheel that gets the grease.

~ Linda - SNRP

Question:

~(S.A., Florida)

Answer:

If you don't have a personal copy of the Federal Parent's guide I suggest you obtain a copy. You can link to the Federal site from the "Education" page and pull up a copy for review or print off a copy of the Federal Parents Guide for your use. I've attended a large number of IEPs this week and I use my copy almost constantly.

Call your school and find out what happened to your request. Somebody dropped the ball.

Thanks for the question.

~ Linda - SNRP

Question:

Dear Linda,
In a discussion we had a while back you mentioned something about an Architectural Overlay. Could you explain what that is?

~(J.M., Utah)

Answer:

Dear J.M.,

Part of what we do here at SNRP is helping families evaluate and determine the architectural needs within their homes to accommodate their family member's disabilities. Whether on new construction or existing homes we offer suggestions for structural changes that will help simplify the physical functionality of their home based on both the current and potential future needs of the family. We provide supplementary drawings printed on clear plastic film that "overlay" the original construction/design drawings. These drawings are to code with detailed technical accuracy and are printed at the exact scale matching the original documents and help the contractor to have an absolute clear picture of what the design changes will encompass. We call these drawings "Architectural Overlays".

Hope that explains it for you!

~ Karen - SNRP

Question:

Dear Linda,
I have been looking for Resource Links under my state and noticed you're missing a few. Is there any way you could add more links to my state?

~ Most Common Question of the week, last week ~

Answer:

An ongoing project, our Resource Links are slowly being updated with additions made weekly. We are aware that Utah has by far the largest list but given that we're based in Utah and our largest user base is here, well, we started here first. We are also working on several other time consuming projects that currently take priority. We'll continue working on Links in other states, as time allows, until we have a reasonable list for each.

Please be aware as of this date we are managing almost 1500 links across the country. Each state list is checked once per year with additions and deletions made as we find them or are alerted to problems. This is a non-funded project being done on volunteer time so patience is appreciated.

We recommend reading SNRP's April 2007 Newsletter entitled, "Resource Links~How To.." as a quick primer on how to use the links currently listed. Many of you may find more resources listed than you thought.

For those wishing to have links added, please contact the Webmaster at "Contact Us" and we will be happy to consider your request.

Please feel free to contact us with any comments or questions you may have.

~ Linda - SNRP

Question:

Dear Linda,
You've mentioned a couple of times that we can donate our old medical equipment that is still in good condition. Do you have some suggestions as to where we could do that? Thanks for the help.

~(S.H., Arkansas)~

Answer:

Dear P.,

This is a great question. There are many places that are more than happy to receive used medical equipment in good condition. If you are donating the equipment to a charity or public institution the donation may tax deductible so be sure to get a receipt for your item.

Any of the following entities in your area would be great places to start:

• Special Education departments at your local school district
• School District Foundations
• Local Children's hospitals (Shriner's hospitals are good places to donate a good wheelchair, walkers or crutches)
• Local charities chapters such as Easter Seals, United way, etc.
• Independent Living Centers often need good equipment for their loan banks.

If your equipment is in less than good condition some Assistive Technology Departments at State Universities will take the equipment to use for spare parts. You may also try your State Department of Human Services and see if they have an equipment bank. Some states do.

Basically, ask around and see who needs what you have in your community. You may be surprised where you can donate your equipment.

For community contact information check SNRPs Resource Listings for your state or use your community phone book and look in the Yellow pages under "Charities".

Hope that answers your question!

~ Linda, SNRP~

Question:

Dear Linda,
Why are you moving with a wheelchair out into the middle of nowhere?

~Most Common Question of the Month, This Month~

Answer:

The new lot is located on the outer edge of a small town. What the viewer does not see is that the photographer (myself) had my back turned to the central part of town. Partially to give some anonymity to the poor neighbors that are going to have to deal with the entire construction process and, frankly, the viewfinder on the camera just wasn't big enough to capture the entire view.

The decision to move was not a decision made lightly. We had several specific criteria that had to be met by a property location before we could take it under consideration. After 2 years of looking at house plans with few options for total accessibility and touring model homes in subdivisions while listening to contractors/real estate agents tell us, "Sure we do accessible! We'll toss in a couple wider doors; give you an ADA style bathroom and a ramp, plenty of railing. That'll work. Come pick your colors", or being told, "That's custom and we'll need to price that out for you", at VERY high cost I might add, we decided to look for non-builder exclusive lots and start from scratch.

The result of that search is the building lot depicted.

For those interested in the criteria we used to locate a lot, find a workable house design and a contractor willing to do what WE need, we'll be adding that information to the New Construction section shortly. Watch for it in the drop down menu on the New Construction front page.

Thank you for the questions folks!

~ Linda, SNRP~

Question

Dear Linda,
How do your Hints and Tips work? And can I submit a tip?

~(K.C. Seattle, Washington)

Answer:

As you've noticed the Hints and Tips section is on the right hand sidebar of the Home Page. You may view new hints and tips simply by refreshing the page. A new one will then pop up.

We would be happy to add any new hints or tips you may like to share, with proper credit given to the submitter. Simply send the information to my attention and I'll see that it gets posted.

Thank you for the question!

~ Linda, SNRP~

Question

Dear Linda,
How familiar are you with the Exceptional Family Member Program (EFMP)?

~(TSgt. S.B.H/Arizona)

Answer:

Dear TSgt. H.,

I am fairly familiar with the program. However, my husband is an Air Force Reservist and as such his Active Duty orders have only averaged 12-14 months at a time with a short break in between. Active Duty military members using TriCare Prime generally fair better on these programs than Reserve and National Guard members.

That being said, we have been enrolled in the EFMP or ECHO program 5 times over the last 8 years. I will be honest and say that we rarely were able to actually use the program. It was limited in scope and services that we could actually use. I spent a great deal of time doing paperwork and on the phone with out of state case managers who were unfamiliar with our community and programs available. Once it became obvious I was spending a great deal of time for zero benefit we opted out of the program. We received better medical coverage by moving from the TriCare Prime program to TriCare Standard and then using our state Medicaid Waiver program as secondary insurance within the civilian medical system in our community. We were able to preserve continuity of care while still receiving services and getting bills paid.

I recommend ALL Active Duty, regardless of branch of service, contact the EFMP or Special Needs Office for their branch of service. Contact information can be found under Resource Links-US Military and then your Branch of Service. You may also contact Military One Source and talk directly to a consultant 24 hours a day. Look under Military Member Assistance Programs on the Resource Links page for all land lines, web addresses and other information.

~Linda - SNRP

Question

Dear Linda,
Is it possible for me to enroll in a Medicaid program and still utilize TriCare?

~(Lisa L., Maryland)

Answer:

Dear Lisa,

Yes, it is. Medicaid or Medicaid Waiver programs are some of the few programs which fall secondary to TriCare. Making TriCare is the Prime insurance provider and Medicaid is the secondary. You must follow the rules and regulations for the Medicaid program eligibility in your state. Please be aware program eligibility requirements vary by program and state and cannot be carried across state lines. If you PCS to a different state you'll need to reapply for Medicaid services in your new state.

~Linda- SNRP

Question

Dear Linda,
Can you tell me if TriCare ECHO is a Medicaid/Medicare program?

~(Terry C. Camden, Maine)

Answer:

Dear Terry,

No, it is not. It is a completely separate program offered to military members and their families. The Extended Care Health Option (ECHO) is a supplemental program to the basic TriCare Health Program. ECHO provides financial assistance for an integrated set of services and supplies to eligible active duty family members (including family members of activated National Guard or Reserve members on Title X or Title 32 orders). You must pay part of the monthly expenses for authorized Extended Care Health Option (ECHO) benefits. The monthly cost share is based on the sponsor's pay grade and services are provided through TriCare.

To qualify for ECHO benefits the family member must

• Have an ECHO qualifying condition
• Enroll in the Exceptional Family Member Program (EFMP) provided by the sponsor's branch of service. This application enrolls individuals for both programs.
• Register in ECHO through ECHO case managers in each TriCare Region. A case manager must be assigned to your case before benefits can be accessed.

Medicaid or Medicaid Waiver programs are some of the few programs which fall secondary to TriCare. TriCare becomes the Prime insurance provider and Medicaid is the secondary. You must follow the rules and regulations for Medicaid program eligibility in your state. Please be aware program eligibility requirements vary by program and state and cannot be carried across state lines. If you PCS to a different state you'll need to reapply for Medicaid services in your new state

For up to date information please contact your regional TriCare office or go to http://www.tricare.mil/mybenefit online.

Best wishes in your quest for services.

~Linda- SNRP