Parent Support Expert - Current & Past Questions

Current Question:

Q. Lisa, Our daughter has a genetic birth defect and has worn bone conduction hearing aids since birth. We recently moved and had to switch insurance companies. I am looking for information on how the best way to approach the HR dept to have hearing aids, speech therapy, and reconstructive surgery included on the insurance plan which is not currently covered. She will have to undergo several reconstructive surgeries. Thank you for your help.

A. Obtaining specialized insurance coverage can be a complicated and time consuming process. My best advice is -- Don't be afraid to ask questions! There are lots of resources available to answers questions if you seek them out.

** Talk to your insurance agent.
** Call the insurance company's customer service line.
** If the policy is through work, ask if the organization has someone in their personnel department that specializes in insurance related issues.
** Talk to other parents who use this same insurance carrier.
** If your child is young & using a Family Service Plan, check with your case manager for tips & ideas.

If these local resource lead to dead ends, here are some other
resources/ideas that may be helpful.

For hearing aids:
1. Contact the company that makes your daughter's aids. Many companies have an insurance reimbursement department to offer tips and suggestions. Some even handle all of the details for you.

2. You don't mention which state you're in, but many states mandate coverage of hearing aids. You can read about the current and pending laws in several states here: http://www.idhhc.state.il.us/insuranceCoverageHaeringAids.htm

3. This article explains what you can do to urge your employer to include
hearing aids as an eligible expense in your insurance policy.
http://www.shhh.org/advocacy/position/insure.cfm

If all fails be sure you read through Paula's article on Resources for People Who Can't Afford Hearing Aids and Cochlear Implants for some alternate funding sources: http://www.ideallives.com/generic298.html

For therapy:
1. Talk with the therapist providing your daughter's therapy. They may know how other families have successfully lobbied for insurance coverage or the clinic may offer a sliding scale of fees to make payment for services more manageable.

2. Be sure you have a doctor's order for you therapy as many insurance companies require one. Also ask if therapy is covered if you use specific providers. Some companies will only approve therapy by specific providers (usually those they have negotiated lower fees with) or for specific periods of time.

3. Another alternative (if your daughter is school age) is to consider obtaining your daughter's therapy through her school district. Many insurance companies will only fund therapy for short term issues (i.e. symptoms related to specific illnesses or conditions). They see long term developmental issues as educational issues that should be address in your daughter's Individualized Education Program or IEP. Clear documentation is key in these types of situations, so having your daughter's doctor and therapists written comments will be key items when asking the insurance company to determine your coverage.

For reconstructive surgery:
1. Check out the Patients Guide to Insurance Coverage here. It's designed for plastic surgery, but talks about reconstructive surgeries in general.
http://www.plasticsurgery.org/surgery/insure.htm

2. You might also consider contacting the Facial Foundation at:
The Facial Foundation; P.O. Box 670528; Cincinnati OH 45267-0528 The Facial Foundation - launched by Dr. Kevin Shumrick, director of facial plastic surgery program at the University of Cincinnati Medical Center and supported by several other area doctors - has formed to raise money and arrange for reconstructive surgery for those without health insurance
coverage.

Best of luck to you both,
Lisa

Editor's Note: Another HearingExchange community member offered more information on this topic.

My son, who is now 15 years of age, also wears a bone conduction hearing aid as part of a cranifacial anomaly which requires reconstuctive surgeries as treatment. In addition to the excellent resources you offered the writer, you might also suggest that she contact the following:

1) Each state has a program for children with special health needs (Title V of Maternal and Child Health.) The program staff may be helpful in assisting the mother to identify resources available to her within her own community or state. The January issue of Exceptional Parent Magazine provides a state-by-state listing of these programs.

2) The CleftLine (1-800-24-CLEFT) is an outreach service of the Cleft Palate Foundation. The Foundation is the public service branch of the American Cleft Palate Craniofacial Foundation, a multidisciplinary organization for professionals who service people with cleft lip and palate and craniofacial anomlies.) The CleftLine is a national hotline offering
information on various craniofacial conditions, and referrals to cleft palate teams and craniofacial centers. In addition, they collect and disseminate information on funding resources for reconstructive surgeries and can offer tips for dealing with insurance companies.

Past Questions:

While this question came from a teacher, our Parent Support Expert, Lisa Simmons of http://www.Ideallives.com had the perfect response.

Q. I have a hard of hearing sixth grade child whom I see for speech. His IEP goals include improving his articulation and pragmatic skills. Can you offer any advice or resources?

A. The presence of a hearing loss often results in speech being difficult to understand. With the use of the most appropriate and beneficial hearing aids or assistive listening devices and a multi-sensory approach, you can usually improve speech intelligibility. Here are some resources to help you get started:

1. The Articulation Index - This page discusses how to measure articulation objectively as well as offering tips on fitting aids & implants.
http://www.listen-up.org/artic-index.htm

2. Tips & ideas for developing language in children: http://www.listen-up.org/language.htm

3. Articles on Oral Motor Therapy techniques http://shop.azstarnet.com/cgi-bin/iti.storefront/1611245187/UserTemplate/8
If you find these articles helpful, the author also has a very practical book entitled "Oral Motor Exercises for Speaking Clearly" available.

4. This page offers not only information on articulation, but also access to some on-line games to integrate into your therapy. http://www.communicationdisorders.net/Articulation.html

5. These articles discuss the different approaches available for teaching language skills to hard of hearing students. 
http://66.111.65.91/gossamer/pages/Special_Education_Articles/
Deaf_and_Hard_of_Hearing_Articles/index.html

Q. Is it reasonable to have to wait one year for our school district to provide the support my daughter needs? My daughter is currently bused to another school district where they have a special program for hearing impaired students. Because of social issues and busing issues we want to bring her back to our own district. However, the special education director said she will need a year to get a notetaker and an oral interpreter in place for our child. Any tips on how I can get services implemented so my daughter can start school (8th grade) in the Fall in our own district? 

A. If your daughter is currently receiving these services in another district then I'm assuming that:

1. Your district agrees that she needs such services, and
2. They are included in her current IEP (individualized education program).

Her IEP probably lists the notetaker/interpreter as a related or supplementary service. In addition to stating that this service is necessary, the IEP should state when/how it will be provided. If the District agrees that your daughter needs this service in order to benefit from her FAPE (free appropriate public education), then it is their obligation to provide it. The fact that they don’t currently have it does not absolve them of their responsibility to provide it. 
From their perspective -- they are meeting their obligation by busing your daughter to a nearby district. If you agreed to this arrangement and signed an IEP with this listed as the accepted arrangement then you will need to request a new meeting of your daughter's IEP team to negotiate a different arrangement for next year. 

For the record, I don't consider waiting an entire year for services acceptable. Services listed in the IEP should start immediately or if delays are necessary, the time frame should be specified in the IEP and started in a "timely manner". If your IEP team is less than cooperative or if the special ed director continues to delay, then you will probably need to take your complaint to a higher level by filing a formal complaint with your state board of education. This link will take you to a database at the US Department of Education. Click on your state to find contact information and usually a website for the state's education agency. If they have a website look for an on-line or printable complaint form & a toll free phone number to register your complaint. Here is the link - http://www.ed.gov/Programs/EROD/ERODmap.html

Q. I am the mother of a three year old hearing impaired child. I would like to get a support group started to the Baton Rouge area. What should be the thing discussed first? What do you think is the most important? Do you have ideas how I should approach starting one?

A. Support groups are a wonderful idea. They give parents a local place to share ideas and resources that are working. They also give parents a great place to vent! Being a parent is hard work and every parent needs a safe place to talk about what's working & where they need help. Plus it's always nice to know you're not the only fighting the battle!

A wonderful resource that will walk you through the process of starting a support group is available through the Parent to Parent website at: 
http://www.parenttoparent.org/Sup-run-t.htm

The "Planning the Meeting" section will give you some nice ideas for topics your group may want to discuss & where to find "expert" speakers to help bring even more information into your discussions. Beyond the list available here, I think "what" to discuss will depend on your group's membership. 

Be open to comments by members that might indicate:

* What challenges they are currently facing
* What issues they feel like they know almost nothing about
* What questions the group has trouble answering for new members
* What transitions group members will be facing soon (infant/toddler to preschool, preschool to Kindergarten, elementary to junior high/high school, school to adult services).

I think as your group gets comfortable sharing you will find you have more things you want to discuss than you can squeeze on the calendar!

Good luck with your new group!

Q. My son is 8 and in 2nd grade. He has a mild to moderate sensorineural hearing loss due to Alport Syndrome. We have been trying to get him an FM system to no avail. Our insurance company says it's the school's responsibility. The school has tested him and because he did so well on his tests (above grade level) he does not qualify for this. He also has ADHD and has behavioral problems. We, as well as our audiologist and otolaryngologist believe that this system is needed for our son. Where do we go from here when the school system says no? We reside in North Carolina. 

A. In asking the school to assume financial responsibility for helping with equipment you are assuming your son qualifies for special education & therefore has the protection of IDEA. It's just a matter of the team deciding what "supports" are appropriate. If your school agrees & has found your son eligible then you've successfully jumped hurdle #1. If not, the first battle you need to fight is eligibility for services. There is an excellent tutorial on eligibility at:http://www.tourettesyndrome.net/Advocacy/
SpecEd/advocacy_eligibility.htm.

Read carefully where it talks about the 2 pronged criteria. Because your son has several diagnoses (a significant hearing impairment, ADHD, behavioral issues) he is likely to qualify easily as "having a disability." The school seems to disagree with you on whether his impairments are "adversely impacting his education." They are basing this on his ability to test above grade level. If you want them to assist you with the FM system you will need to demonstrate how his hearing impairment is "adversely impacting his functioning in school or his ability to benefit from his public education." 

You mentioned an audiologist & a otolaryngologist who recommend that your son needs and would benefit from an FM system. Invite them to come with you to your son's next IEP team meeting as individuals with expertise in your child's disability area. They may be able to provide a more convincing argument to the school administration than you can as the parent.

If despite your best efforts, the team will not agree to provide the system and you have solid documentation from your "experts" that the system is needed and that his education will be adversely effected without it, then you may need to consider asking for mediation or filing a complaint with your state board of education. Each state has a Parent Training & Information Center that has
trained personnel available to help parents handle these types of situations. The PTI for North Carolina is Pathfinder Family Center. You can contact them on the web at: http://www.pathfinder.minot.com/index2.html. 

The other in-state resource you have is the North Carolina Assistive Technology Project. Most AT projects have a staff person who specializes in funding because it's such a tough issue. You can read more information about funding & contact North Carolina's funding specialist at: http://www.mindspring.com/~ncatp/fund.htm.
You will also find some "Helpful Hints for getting Assitive Technology through your School District" here: http://at-advocacy.phillynews.com/docs/atedpiat.html. 

Q. My son who is 7 attends private school. Until last year he received speech therapy from the local school district. This year the therapy has been denied based on a new law. What other help is available for us? Also, would you recommend any testing procedure to find the origin of his problem? It was always blamed on poor hearing and he had tubes in since he was 2.

A. You don't indicate what state you live in or what type of new law has excluded your son so that makes answering your question a bit more difficult. Let's take the issues you mentioned one at a time. First, denial based on a new state law.

Depending on what your state law is using as exclusion criteria, I would encourage you to check the law against federal law. The state laws are allowed to provide more than federal law mandates, but not less. You may be able to make a case that your son qualifies for speech services under federal law, specifically IDEA. (I'm assuming here that your son still qualifies for special education. If that's not the case, these resources also provide information on eligibility guidelines). Some great resources for learning more about IDEA are http://www.wrightslaw.com & http://www.ideapractices.org. Be sure as you are researching that you look for information relevant to private schools. The school district's responsibilities are somewhat less when a parent has chosen to place their child in a private school rather than the public one available. 

The second issue raised is whether to determine the origin of your son's hearing loss. If you are comfortable that you understand the level of your son's hearing loss and what type of interventions or supports he needs to succeed, then additional testing probably isn't necessary at this time. I think it's generally more helpful to focus on what needs to happen in the here and now than to focus on what went wrong originally. 

If you don't feel like you have a good understanding of your son's current functioning level or you need medical documentation to support your request for services then additional testing may provide you with better information to make more informed decisions. This is an excellent article on hearing assessment: http://www.asha.org/hearing/testing/assess.cfm . If you are gathering documentation at this stage, work closely with the audiologist & speech clinician to make sure their report reflects everything they believe your child needs. Verbal comments made to you & not included in the report will not be as convincing when presented to your son's school district.

In the final analysis you should try to negotiate a compromise with your local school district that gets your son as much of the needed therapy as possible or opt to obtain private speech therapy services. Because he has a history of receiving services, it should make it simpler to re-instate them at public expense. For some tips on negotiating I would recommend this article by Brice Palmer: http://www.wrightslaw.com/advoc/tips/
palmer_negotiation_process.htm Don't be discouraged if you are unable to get everything you want in the initial meeting. Frequently it is easier to add additional sessions or lengthen current sessions once they have been OK'd by the district to begin with. 

Q. I am a teacher of the hearing impaired and have worked with deaf children for several years. I have found some deaf children difficult to work with because they question what they're asked to do. They want to argue, delay doing their assignments, correct my signing, etc. Is this behavior related to their deafness or are they just strong willed children? I have found I must be very firm with them, but I get tired of the continuous struggle. I've never heard anyone address this issue.

A. It sounds like you are in a difficult position. I'm sure the continuous battle of wills is draining for everyone involved. I would suggest trying to optimize your classroom conditions & teaching strategies to show your students clearly that you support their efforts to succeed. My gearing the environment to support success they will soon learn their delaying tactics aren't necessary. To help you through the transition I would recommend the following resources:

1. Galludet's Reading List Related To Behavioral Disabilities In Students Who Are Deaf - 
http://clerccenter.gallaudet.edu/InfoToGo/188.html

2. Strategies for teaching students with hearing impairments- http://www.as.wvu.edu/~scidis/hearing.html#sect2

3. Resource Guide for Classroom Teachers - http://www.bced.gov.bc.ca/specialed/hearimpair/toc.htm

4. Guidelines for IEPs for Deaf Students - http://www.bced.gov.bc.ca/specialed/hearimpair/toc.htm

Q. I am a mother of 3 hearing impaired children who have been diagnosed with Recessive Non-Syndromic Hearing Loss. They have bilateral sensorineural hearing loss. I've been told that this is a progressive disease and they could possibly lose their hearing altogether one day. The children are 6, 4 and 8 months old. We have been teaching them sign language but not fluently. Is there any way of knowing if or when they could possibly lose all their hearing? Should I start taking classes to become fluent in sign?

A. Part of your submission was cut off, but these are the issues you presented:
* a need to know more about Recessive Non-Syndromic Hearing loss; 
* a prediction about when or if your children will lose their hearing completely 
* a need for information about developing your sign language fluency

Please review the following resources:

For an overview of hereditary hearing loss go to: http://www.geneclinics.org/profiles/deafness-overview/details.html

If you know what genes are involved, this chart can give you predictions regarding where hearing should stabilize for your children - http://linkage.rockefeller.edu/nshl/info.html#info

With early detection and appropriate assistive devices (hearing aids, cochlear implants and FM listening systems) children can learn to speak orally. You may wish to read the book, "Choices in Deafness" by Sue Schwartz. It gives a good overview of all the options open to deaf and hard of hearing children. It is available at the HearingExchange Bookstore at http://www.hearingexchange.com/bookstore/index.htm.

For further information on sign language check out:

The Signing Family Book - http://www.amazon.com/exec/obidos/ASIN/
1563680696/12ideallivescom/107-5580168-5710933
ASL on CD-Rom - http://store.yahoo.com/lmcomp/10770.html
On line training in ASL - http://library.thinkquest.org/10202/

You may also want to explore participating in research related to Recessive Non-Syndromic Hearing Loss to increase your knowledge as well as get assistance with testing costs. You can find out more about one of these studies at: http://www.boystown.org/btnrh/deafgene.reg/recestdy.htm

Q. My ADHD son has spent 6 years at an oral school. He was profoundly deaf prior to receiving a cochlear implant, 4 1/2 years ago. Although his speech has come along, he still cannot write a proper sentence. His reading is probably at the early second grade level. He is now in the fifth grade, and ready to "graduate" to middle school. Are these "normal" results for an oral school?

A. I think it's hard to call any rate of progress "normal". So much depends on the strengths and disabilities of each individual child. However if you are interested in research results, the Gallaudet Research Institute has some interesting information on literacy & students with hearing impairments at:
http://gri.gallaudet.edu/Assessment/literacy.html

Overall, it sounds like your son has made tremendous progress over the last few years thanks to his hard work & the extra opportunities you have provided him. The 2 primary areas that still seem to be
of concern are his delayed reading level and difficulty with producing written work. I've focused here on providing some additional resources for those areas as well as basic information on children with both a hearing impairment & ADHD:

Dual Diagnosis information:

1. Deafness & ADHD - http://deafness.about.com/health/deafness/
library/weekly/aa082800.htm

2. Auditory Integration Training - This site explains how AIT can be beneficial to children who have
a hearing loss as well as an ADHD diagnosis. It also offers a checklist that can help you determine if
your child is a good candidate. http://www.vision3d.com/adhd/

Resources on reading & writing supports:

1. Reading/LD Online - http://www.ldonline.org/ld_indepth/reading/reading.html

2. Writing/LD Online - http://www.ldonline.org/ld_indepth/writing/writing.html

3. Assessing Writing Skills
(will help you do an IEP objective in this area) -

http://www.ldonline.org/ld_indepth/writing/
isaacson_assessment.html

4. Helping your child learn to read - http://www.listen-up.org/birgit2.htm

5. Literacy (Reading & Writing) - http://deafness.about.com/health/deafness/cs/
literacy/index.htm?terms=writing+skills

Since your son is "graduating" to a new school, you may also want to put together an Information Packet to help his new team, get "up to speed". This page offers a nice overview of how to do
that - http://www.listen-up.org/hand-out.htm

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