The unexplained explained – hidden insurance perks for your special needs kiddos.


It’s the end of the year and the holiday season, you know what that means? Insurance policies change! You thought I was going to mention something fun, didn’t you?

Bah Humbug… a majority of the plans change around the beginning of the year, as I’m sure you’ve heard/seen on tv, the radio, or any electronic device hooked up to the outside world.

Having worked in healthcare, done medical billing, and being a special needs parent, I get asked about hidden perks or things that are available that’s not well known. Let’s dive in!

Please note, if you do not live in the United States and are receiving universal healthcare, this whole article will NOT make any sense to you.

First and foremost!!!!

Legend of Zelda, owned by Nintendo

Many people don’t know that MOST insurances have caseworkers available. You can request to be assigned to a caseworker. Said individual will help you with insurance claims and getting the items/care your kiddo needs. This is also available for adults, it’s great for people with disabilities.

I do not believe Tricare offers this. I haven’t had much luck with that, however, we have a caseworker with Thing 2/4’s secondary insurance. She checks in every 4-6 months, unless we need something. She goes to bat for us with the primary insurance, directs our call to the right department if we are having issues with claims/prescriptions, and best of all… she will communicate with the doctors’ offices to obtain prescriptions for health supplies/DME and coordinate with a DME supply company.

Medicaid

  1. Medicaid is an insurance offered to children that fall into a certain tax bracket.
  2. If your child qualifies for Medicaid based on house income only, you might lose it if you get another health insurance. The income levels vary at that point. Speak with a Medicaid rep if you are thinking of getting healthcare through the marketplace or work.
  3. If you child has the special Medicaid for disabled children (there’s a list of qualifications, receiving SSI as a disabled child is the most common), you CAN have another health insurance, and is often encouraged. This may vary in some states, but please consult with someone.
Snoopy, owned by Peanuts

How does the Affordable Healthcare Act affect me:

Previously, having any one with medical issues was a nightmare for obtaining medical insurance. People would get turned away for having pre-existing medical conditions or would have to pay premiums for 3-6 months before even being allowed to use their insurance. I remember this well because my thyroid died when I was in high school. When I obtained insurance through my then job, I was not allowed (per the insurance) to use it for 6 months all because I have a pre-existing condition. Mind you, 20 years ago, levothyroxine was less than $10 a month at the time without insurance. Even now, it’s less than $20.

Insurance companies MUST cover mental health. This is a huge win because many people with chronic illness or disabilities suffer from anxiety and/or depression and even medical PTSD. Caregivers can have caregiver PTSD or burnout.

Insurance plans must include at least a basic prescription plan. No more having to add on 50 million options to your basic crap plan.

Your insurance covers your child until they are 26, sometimes longer if they are disabled or special needs.

Durable Medical Equipment (DME):

What is Durable medical equipment?

Durable Medical Equipment is equipment that

  • is Durable (can withstand repeated use)
  • Used for a medical reason
  • Not usually useful to someone who isn’t sick or injured
  • Used in your home
  • Generally has an expected lifetime of at least 3 years, (some insurances require 5)
  • are ordered or prescribed by a physician

Examples of DME:

This includes, but is not limited to:

  • wheelchairs (manual and electric) and scooters
  • hospital beds
  • traction equipment
  • canes
  • crutches
  • walkers
  • kidney machines
  • ventilators
  • oxygen equipment and accessories
  • monitors
  • blood sugar meters
  • blood sugar test strips
  • continuous passive motion devices
  • continuous positive airway pressure (CPAP) devices
  • pressure mattresses
  • lifts
  • nebulizers
  • bili blankets and bili lights
  • suction pumps
  • breast feeding pumps
  • adaptive and assistive devices/technology*

* Adaptive vs Assistive devices/technology:

Assistive technology refers to “any item, piece of equipment, or product system, whether acquired commercially, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities”. These can be harder to obtain through insurance companies.

Where as Adaptive tech refers to items/equipment that are specifically designed for persons with disabilities and would seldom be used by non-disabled persons.

Adaptive tech examples
  • Screen readers  – allow the visually impaired to easily access electronic information
  • Braille and Braille Embossers – a printer for braille
  • Large-print and/or tactile keyboards – the large print is self explanatory, but the tactile keyboards have additional raised portions on the keys (think of the bump on keys “F”, “J”, and num pad 5 on a standard QWERTY keyboard.)
  • Amplified telephone equipment – allows users to amplify the volume and clarity of their phone calls. Some have the option to adjust the frequency/decibel for those with specific hearing loss.
assistive tech examples
  • Adaptive Cutting Equipment – Cutting aids help make working in the kitchen much easier for one-handed people or sufferers of strokes/hemiplegia.
  • Holders – peeling plates for one handed peeling, pot and pan holders to prevent spills while cooking, etc
  • Non Slip Mats – often used for writing/drawing and prevents the page from sliding around on the table
  • Dinnerware – suction plates/bowls to prevent sliding while eating, equalizing spoons/forks for individuals with tremors, etc
  • Openers – one handed bottle and jar openers
  • Augmentative and Alternative Communication (AAC) Devices – one of the most requested assistive technologies, it’s a tablet or laptop that helps someone with a speech or language impairment to communicate. I will do a separate section on AAC.

How to get DME:

This part is pretty straight forward, only not. Your healthcare provider will write a prescription for said DME. Then you have to find an DME supplier that accepts your insurance. The supplier will work with you and your insurance to get the DME approved or find acceptable alternatives. (Or you can have a caseworker through the insurance company and they will do the leg work for you).

Don’t be discouraged if the insurance denies it the first time. You and your provider may have to provide additional documentation so the approval board will be happy. (Or get a caseworker….)

(Get the caseworker).

Monty Python

If insurance is a no go, there are tons of grants out there for various equipment and diagnoses. They are too numerous to add them all. I will list the ones for AAC below as it’s own topic.

Value Added Services:

What is a Value Added Service?

Dr. Mario, NES, owned by Nintendo

These are services that hardly anyone knows about that are available through your insurance and sometimes even your employer. Each insurance/employer has different services available, so you will need to specifically ask for “Value Added Services.”

These services often help patients with long term care by helping change behaviors vs throwing meds at every problem (which can be costly for the insurance and side effects can be a detrimental to the employer).

A common thought is providers don’t want to prescribe several pricy medications for something that will persist without intervention or behavior modification. (there are some outliers as you will see)

Examples of Value Added Services:

Not everything on this list is covered by every insurance or employer. I am also not listing everything that is available. You will have to request a list of what is available for you. Your caseworker can assist you with this. (How do you think I got all this info?)

  • Adherence and disease management programs – this often includes a treatment team (providers, nurses, specialists, pharmacist, dieticians, psychologists, etc) to ensure you are educated about your disease and are adhering to your treatment plan to best optimize your health with a chronic condition. Chronic medical conditions often included in this are:
    • Diabetes Mellitus
    • Congestive Heart Failure (CHF)
    • Chronic Obstructive Pulmonary Disease (COPD)
    • Coronary Artery Disease (CAD)
    • Asthma
    • Hypertension
  • Reimbursement assistance – they do a host of things, but most commonly are used for help covering copays and deductibles.
  • Data products for payers and manufacturers – analytics, numbers, stuff
  • Infusion therapy – simply put, home IV services
  • Physician education and support – required and bonus Continued Medical Education (CME)
  • Patient education and support – your discharge and summary papers are included under this. The staff or nurse will confirm you understand your instructions, give you a copy, and sometimes follow up with a phone call.
  • Patient lifestyle management – this can include support groups, classes, having a caseworker (not the kind I keep mentioning).
  • (my favorite) Special Needs Summer Camps – camps designed for people with disabilities or special needs. They often have specific diagnoses they take. I found out this was covered by our caseworker. I have a list of camps (that were still running summer 2021, as many shut down due to Covid).

The most requested – Augmentative and Alternative Communication devices:

So, these can be hard to come by because many times insurance companies will argue there are no-tech or low-tech ways to use Augmentative and Alternative Communication. They include:

  • gestures, pointing, and facial expressions,
  • writing,
  • drawing,
  • spelling words by pointing to letters, (Ouiji bord?!)
  • pointing to photos, pictures, or written words (eg: PECS or Picture Exchange Communication System)

These of course can be issues with mobility problems, Pervasive Developmental Disorders (body language is a no go), reading difficulties, and new situations an individual is not prepared for.

High tech AAC:
  • using an app on a tablet to communicate – most common wanted is an iPad
  • using a computer with a “voice,” sometimes called a speech-generating device (SGD).
    • eye gaze devices – these are for individuals who still have their mental facilities, but have extreme physical limitations. Common brands include Tobii (I’m not crying, you’re crying), and Eyegaze.
    • portable electronic PECSLingraphica is a brand that is often approved by several insurances and is highly personalized with the words you want.

How to get an AAC:

insurance

I implore you get a caseworker. They have more pull in the insurance world than calling customer services.

The electronic PECS and SGD are easier to get because they are not used by non-disabled people. The hardest to get is a smart device, like an iPad because non-disabled people can use it. Many assume because it is less expensive than other AAC, it will be easier to get one or pay for one out of pocket, but they’re still pricey.

Most of the medical documentation is provided by the health care provider for AAC’s, however, should you fight for an iPad, you have to give clear reasons specific to your situation as to why an iPad would fit your needs. You will still have to be backed by a professional (letters of medical necessity).

  • List the cost of the iPad
  • list the apps you need and why
  • list the cost of said apps
  • attach any articles you’ve found regarding iPad and your child’s diagnosis (the more academic, the better)
  • attach any articles you find relating how the apps are beneficial (the more academic, the better)
  • educational necessity, as in the device will allow for your child to participate in a Free and Public Education (FAPE)
School

If the insurance route fails, schools can provide an assistive device. However, the device is still property of the school and you will have to receive permission to have the student remove it from the classroom/school. (Many school districts have pre-K available at age 3 for special needs children, after they age out of Early Childhood Intervention or ECI).

  • 1) request for an evaluation by a professional knowledgeable with AAC’s. They will test your child with various AAC devices and make a recommendation for which device your child was able to work well with.
  • 2) request it to be a part of therapy
  • 3) amend your child’s IEP to include said device. Specify if you are able to take it home and what apps are allowed if it is a smart device. refer to How I do it: AAC in the IEP
grants

If all else fails, grants are often available to get an AAC for your special needs kiddo. Look around, ask your caseworker and providers. Hospital affiliated social workers can also be a help. I didn’t list ones that only serve specific counties as the list would be too long. Be sure to check in your local area if these don’t work for you.

iPads

Little Bear Gives accepts applications for fully loaded iPads for children with CVI (Cortical Visual Impairment)

Different Needz does fundraising throughout the year to provide grants for DME for children.

Cerner Charitable Foundation, formally known as First Hand Foundation, offers grant funding for medical costs, equipment, vehicle modifications, or displacement.

Friends of Man helps with DME, glasses, dentures, hearing aids, etc.

Autism Care Today is a grant program specifically for children with Autism to get iPads and other assistive devices, ABA therapy, safety equipment (like GPS trackers), social skills learning, and special needs summer schools.

Danny’s Wish raises money so they can assist with children with Autism getting iPads.

National Autism Association has grants for a 32 gb iPad, extra protection plan, the Avatalker AAC app, and a protective case.

not a grant, but Apple offers a Trade in program for old devices when purchasing a new one.

speech generating device

Different Needz does fundraising throughout the year to provide grants for DME for children.

Cerner Charitable Foundation, formally known as First Hand Foundation, offers grant funding for medical costs, equipment, vehicle modifications, or displacement.

Friends of Man helps with DME, glasses, dentures, hearing aids, etc.

Small Steps in Speech offers grants for AAC excluding iPads.

AAC Funding Help lists insurances known to regularly approve SGD and other ways.

your friendly, neighborhood Charities

If all else fails, you may need to contact a local charity who may help with funding or fundraising. Another option is a service club, they are designed to serve their communities. Like Lions and Shriners and Elks. Oh my!

I’d say look in your local yellow pages to see what clubs are in the area, but that would be dating myself.

Important Update!! 12-19-21:

There is a free app available to use across all platforms. It is not customizable and requires internet access as it is via the browser, but it is a good alternative while you are working on getting an AAC device.

In closing:

I know this post was long, boring, and tedious, but I am hoping I helped in some way.

Enjoy your holidays and stay safe out there. Deal with insurance stuff next year. ~wink~

Advertisement